NATIONAL TUBEROUS SCLEROSIS

The TSC alliance is extremely informative, supportive, and helpful. They go above and beyond to educate families and provide resources.

My son, now deceased, had tuberous sclerosis. This organization (TSA) supported us throughout. It supported research that helped discover the gene(s) responsible for this dreadful disease. It has also given us personal support in the form of encouragement, information, etc. I attended several of their national research meetings and I myself am a former full professor (over 100 publications in my own field) at a medical school and I was blown away by the dedication, efforts and research completed by those that TSA supports. Frankly I was embarrassed that my own profession, a surgical profession, produced so little output per dollar compared to the research that the TSA supported researchers provide per dollar. I donate every year. and will continue to do so. It is best nonprofit I know of. Bar none.

TSC Alliance has been a beacon of light for me for the past three decades, offering hope, advice, support and guidance. As an organization they have strived for research in the field of Tuberous Sclerosis, promoting awareness of the TSC, and outreach to the entire world of people diagnosed with TSC. Individuals - professionals working for and volunteering for TSC Alliance are amazing - nothing short of amazing" their dedication, care and compassion have embraced me as I wobble through the complexities of TSC. I am forever grateful and in admiration.

The Tuberous Sclerosis Alliance has been there to support me with resources as I have raised my 28 yo son with tuberous sclerosis complex. Not only have they connected me with invaluable assistance, but they have given me direction through the years. The Tuberous Sclerosis Alliance is a leader in terms of advocating for the needs of individuals not only through support but also research. When my son was born with tsc there was no genetic test at the time. Now treatments are established and the tuberous sclerosis alliance has been involved in that progress every step of the way! Thank you!

I was introduced to the TSC Alliance 5 years ago when my granddaughter was diagnosed with TSC. The staff and volunteers offer unconditional hope and support to families coping with numerous healthcare decisions. I joined the effort as an advocate for government funding of research studies to support better health/social/educational outcomes and eventually a cure. The TSC community works tirelessly to teach and advocate for a portion of limited research dollars at the state and federal levels of government. These funds add to the studies and support provided by the private sector developed through ongoing staff fundraising campaigns.

Hello, National Tuberous Sclerosis

I hope this email finds you well. My name is Miosotis Ledesma, and I am the case manager here at John F. Kennedy High School’s Wellness Center. We are excited to announce our upcoming Community Fair, which will be held in conjunction with our New Student Orientation on Thursday, August 22nd, from 6p-8p.

We would be honored to have your organization participate in this special event. The Community Fair serves as a wonderful opportunity for new students and their families to engage with local businesses, non-profits, and community services. It provides a platform for organizations like yours to showcase your programs, services, and products to a diverse and eager audience.

Event Details:

Date: Thursday, August 22nd

Time: 6p-8p

Location: John F. Kennedy High School Gymnasium

Setup Time: 4:30p

Your participation would not only enrich the experience for our new students but also help strengthen the bond between our school and the broader community. We believe that your presence would greatly contribute to the success of the event.

If you are interested in participating, please fill out the google form attached to this email. We will provide a table and two chairs for each participating organization. If you have any additional needs, please let us know in advance, and we will do our best to accommodate them.

Thank you for considering our invitation. We look forward to the possibility of your involvement and the chance to work together to create a memorable and impactful event for our new students.



Google Form:

https://docs.google.com/forms/d/e/1FAIpQLSdZgyIzCuosIBIJJbT_T-0QHge_TKEs3tqmBjPsgn46lOptNw/viewform?usp=sf_link

With a grateful heart, I thank the TSC Alliance Team for their hard work, the very interesting online presentations, and the many new information.

TSC Alliance helped us tremendously when our adult son was diagnosed with TSC2 (at the time we just knew Tuberous Sclerosis). They found him a neurologist to go to (most people get diagnosed younger and they transition to an adult TSC neurologist) as I couldn't find any neurologists that could see him within 6-12 months. I sent in an email request to TSC Alliance for help on Memorial Day in 2021 and we were seen at the neurologist on June 10th. They have the sweetest, most dedicated staff. They are truly a blessing. They are still a great source of new knowledge as things are constantly changing and progressing.

This organization helped me find a Center Of Excellence for care. There are no TSC doctors in Nevada. They provide education about this disease for patient and family members. They also helped refer me to NORD for travel assistance.

My son, Colton, was born with tuberous sclerosis complex. The TSC Alliance has helped us get connected with doctors who specialize in his condition as well as important resources in our community. We are very thankful for the TSC Alliance and all of the work they are doing on behalf of families who have a loved one with TSC! We are also so grateful for all of the research they are helping fund to find a cure!

such great help with research, current information & resources, and a great encouragement to those living with the disease.

Please let us know when will be the tsc 2 medicine be ready for our kids. Our children r suffering n it's been so many years not even aa single effective medicine hav formed by the research team. My daughter is 7 months old n having seizures when she was 1 month old. Plz make some gene therapy successful medicine. It's really needed I beg for it be quick our child is suffering

This society is one of a kind and truly is an amazing cause for the world.

The TSC Alliance is a well-run organization that provides so much hope, information, and inspiration for patients and families battling the horrors of this unique rare disease. The provide support to everyone from birth throughout the adult senior years!

Our family could not have gone through the initial challenges of our son's diagnosis with the TSC Alliance. We are forever grateful for them and the dedicated volunteers and associates who work so hard to change and improve the lives of those with TSC.

Have seen this group interact with a family member., and continue to be a donor because of what I’ve seen.
Whether it’s research, family support, medical education, or otherwise, leadership is very involved. The organization is always working for and engaging its constituents to help those affected with TSC. I find it to be well run and responsive/adaptive to meet the needs of those who seek their services.

The TSC alliance has been invaluable to our family as we journey through life with a TSC family member. TSC is the only non-faith-based nonprofit we financially support because of its proven track record of life-changing advocacy and advances that have directly improved our lives. TSC alliance is driven, forward-thinking, and very responsive to the crowd (us) for whom it advocates. Thank you for everything, TSC Alliance. You are a gift from God on our journey!

The TSC Alliance has been a great resource for support and knowledge. I’m so grateful for this organization! They have been helping for since our daughter was diagnosed in 2013!

The Tuberous Sclerosis Alliance is a godsend. They have been there to support and guide me for 34 years of living with Tuberous Sclerosis in my daughter’s life. I don’t know where we’d be without this wonderful organization by our sides in every way.

Great job
Ever since my son was 5 months, ( now 27) NTS has been a great support
Hope they continue this road for many years

I have been involved with the TSC Alliance since my daughter was born, in 1989. The TSC Alliance has been a lifeline for information about new treatments, about caring for a loved one with TSC, connecting with other families who share similar experiences, and more. The TSC Alliance provides helpful pamphlets with information that can be given to teachers, and doctors. TSC Clinics provide care and support from experts in the field. The TSC Alliance has funded studies about treatments for the various symptoms associated with TSC, including treatments for epilepsy, behavioral challenges, kidney involvement and more.

The information and contacts provided by the organization provided valuable resources when we first learned of TSC. We are grateful to the National Tuberous Sclerosis and their aid.

This is a great organization that truly cares for the families and those affected my TSC. For as long as I live, I'll continue to volunteer in any way that is needed.

The TSC Alliance has been a wonderful organization for me. The depths of educational information, medical referral resources & wonderful staff has been invaluable!! I have volunteered in various capacities in return because of their great presence in my life. They are definitely the first organization I would recommend a newly diagnosed TSC person or family go to. I am so grateful for the TSC Alliance!!!

When my daughter, Chloe, was diagnosed with tuberous sclerosis complex in 2010, the doctor told us to visit www.tsalliance.org for the most accurate information about the disease. Visiting that website was the best thing we could’ve ever done for Chloe. It guided us to some of the best doctors in the world. Thanks to the TSC Alliance, Chloe was able to start a new drug in 2012. That drug has shrunk tumors and cysts, and it has dramatically improved Chloe’s life. While she was originally expected to need a kidney transplant in her teens or early 20s, she now might never need one.

None of this would be possible without the TS Alliance.

In the 2 years since my last review, the Alliance did it again. Faced with some tough medical decisions, we reached out to them for some assistance and they set us on the right path. Without their help our Zachary may have undergone some unnecessary surgery involving his Kidney. Additionally, we attended the world TSC Global conference where we learned so m much more about the specific manifestations of this disorder and what progress is being made and has already been made. They even showed us how we could offset some of our out of pocket expenses so that we could attend, having just come from an out of state trip to a specialist.

Best yet was that thru this organization we have strengthened our resolve to keep our heads up and fight for everything Zachary and ourselves deserve because lets face it, this is no task to take on alone. With their mentorship, we now have the confidence and courage that we initially were lacking, so much so that we wanted to be a part of their mission to help others who may be where we were before we reached out. Please do not Navigate TSC without the Alliance to help guide you

The TSC Alliance has played a pivotal in my journey advocating for my daughter with Tuberous Sclerosis Complex. The TSC Alliance funds critical research to helping treat TSC manifestations and provides essential education about how to manage the disease utilizing the latest research available. In addition, the TSC Alliance connects you others affected with TSC to build powerful and life-changing relationships. The wealth of information provided by the TSC Alliance ensures that I can provide my daughter with the best resources to give her the best possible life.

The TS Alliance has been a lifeline for our family throughout our TS journey. After our diagnosis, they connected us with doctors and other families. They helped us share our story and build our own community of support and they have been a primary source for information, education and resources. They are an exemplary non-profit organization and we are proud to stand behind them.

My grandson has TSC and my family's connection with the TS Alliance has been an actual life saver. We have learned so much about the disorder from their website and from participating in webinars and the international conference. We've gotten educational advice from the TS Alliance and used this information to improve my grandson's school program. Through the Alliance we connected with the Cincinnati Children' Hospital TS Clinic when my grandson first started having seizures at the age of 3 months. From the time to now at age 7, the doctors and staff at the TS Clinic have been a constant part of his life, from monitoring medications, testing and ultimately to epilepsy surgery this year. I have been involved in TSC fundraising walks and am one of the Education Mentors.

The TSC Alliance has been a HUGE support to our family and our local community! They have helped us along every step of our almost 9 year jouney...from testing, to research, to finding Centers of Excellence for TSC care, to fundraising, connecting us with other families, providing conferences, online resources, absolutely everything imaginable! They are kind, care, compassionate and on top of cutting edge research in their journey to find a cure! We are so grateful to this fantastic organization and honored to be connected to them!

The TSC Alliance changed my life from the moment I was diagnosed at 10 months of age to where I am today serving as a volunteer Chairperson for Indiana. The Alliance provided the guidance my family needed in 1999 as they navigated this new disorder they never heard of before. Now, they help me as I transition to being an independent adult with this disorder. So happy to be apart of this astounding organization!

The TS Alliance was absolutely instrumental in helping me to find my footing in terms of community, resources for my daughter's medical and educational journey, and beyond. The organization's wholehearted dedication to families impacted by TSC greatly diminishes the despair associated with this condition, inspiring hope, confidence, and optimism for the road ahead! - Rhiannon (NJ)

The TSC Alliance has a mission to not only find a cure, but is always helping families navigate their difficult journey. They encourage community gatherings to minimize the feelings of isolation. They present medical updates, resources, as well as help with advocacy in the schools. Government advocacy for research funding is also a key component of the TSC Alliance. And most importantly, they are committed to finding a cure for the complex condition of tuberous sclerosis complex.

The TSC Alliance not only works with research to find better treatment for the TSC community. They are available to the same community for help and resources. We have been involved with the TSC Alliance for about 22 years, and in the past 2 years they have been a tremendous help to our family when our son developed a possible PEComa by his knee. They are caring individuals who genuinely want to find a cure for TSC.

This organization is amazing! Not only is it deeply focused on raising funds for research, which is closest to my heart, it has joined together a strong community that supports one another. The staff at the TSC Alliance is dedicated to moving the ball forward to help find a cure for TSC, and short of that, to help fund clinical trials into medical advances for treatment. My experience with the TSC Alliance has been nothing short of incredible, and this organization has made our family's journey with TSC easier to navigate.

Hard to believe that I first learned of the TSC Alliance almost 8 years ago when my baby was diagnosed in utero during a routine ultrasound, the day after her due date. Lots of things go through your mind at that moment, as well as the days and weeks that followed. I was extremely fortunate to have found the TSC Alliance shortly after our diagnosis. They are a wonderful resource, not only for information about TSC, but with assistance making connections with physicians, applying for studies & clinical trials and simply having a conversation with someone that has already traveled down this path. I honestly do not know what I would have done without their guidance and resources as I navigated this new terrain. They are simply amazing.

The TSC Alliance has made a huge impact on my family. It has provided an avenue of support and hope while we deal with navigating the complexities of tuberous sclerosis complex. From medical research opportunities to educational aide to a shoulder to cry on, there has never been an issue that they didn't help me address.

The Tuberous Sclerosis Complex Alliance has been our family’s lifeline now for over 20 years. In ever new season of living life with TSC, the Alliance has met our needs when we have come looking for support or resources or clinical help or any of a number of issues! The leadership grows stronger every year and what was once a small grassroots group of families has become a force to be reckoned with in the nonprofit world.

My story started a little over 18 yrs ago. I was told that my unborn baby probably had "Tuberous Sclerosis". What was that? We were scared, had never heard of that before, we were so lost. As soon as he was born a couple of days later, we met Dr. Northrup, as to I delivered out of the hospital she worked at. I didn't know that before I was sent there to deliver. Being the ever so knowledgeable on TS, she made the diagnosis, ran all the test and answered all the questions. I immediately, googled Tuberous Sclerosis and how to get connected with anybody. The website came up, I got in contact, met some local families, which I have been friends with for 18 yrs! I chaired our local chapter for many yrs, went to March on Capital Hill, and attended a couple conferences. They are amazing in everything they do! Such an amazing organization and the many ways they help those affected and their families. I honestly don't know what I would have done without them!

The TS alliance has been a lifesaver for our family. They were there for us upon our initial diagnosis and have stood by us throughout our journey. They are an upstanding organization that we are proud to share with our friends and family.

The TSC Alliance has been a safe place for my family since my daughter was diagnosed with TSC last year. The resources they provide are helpful and their staff is so supportive! We are grateful we found them to help us navigate every step of the way.

Tiberius Sclerous Alliance has been so helpful to my family. When my granddaughter was first diagnosed we had no idea where to turn. The Alliance was there to help us understand TS, what it would mean to my granddaughter and our fami,y. They have been there every step of our journey from medical information to educational information. I now volunteer as an Education Parent Mentor for the TSC Alliance to give back some of the support that we have been given.

I am so grateful to the TSC Alliance for their support of medical research and updates, webinars on all areas of concern to parents and professionals and their support of families. I honestly don’t know how we would have made this journey without the Alliance

The TSC Alliance is awesome. It is an extensive network of people with lived experiences with TSC. There is support in every state and people who can help, support and connect individuals and families with the challenges they face in their journey. What is great the Staff is there to connect people with other families and or experts in TSC. That ability to help people connect especially in Healthcare, it can be challenging. This organization truly supports the families and individuals with TSC and they help get results.

I have been involved with this non-profit since my daughter Rosemary was diagnosed at 10 months old. The TSC Alliance has helped support us in so many different ways I honestly don't know where we would be without them. I have been able to feel secure in handling my daughters health because of the work that the TSC Alliance does for those with TSC and their families.

Always full of resources, community connection and driving the reasearch forward not only domestically but internationally. I am so proud to be part of such an amazing organization!

Love the Alliance. It's an amazing org/resource for newly diagnosed and veteran families.

I am a parent of a child with TSC and started as a volunteer a year after his diagnosis in 2007. I can't say enough good things about how this organization has supported our family. They have been there to help us when we were having troubles with our sons school, when we needing help finding a support system, updating us on research and connecting us with doctors and specialist that were difficult to find. This is a small but mighty community and the TS Alliance wholeheartedly supports. I never want to welcome anyone into this family of TSC, but if you have to go through something like this, there is no better community to be a part of. The TS Alliance sets the standard and the example for that with everything they do.
As a volunteer, they are extremely supportive, provide training on a regular basis and are always available to help support any situation we are trying to navigate. I have never volunteered for an organization that is this supportive before starting with the Alliance.

I have been involved with the TS Alliance for nearly 3 years. They have provided support for my family during this time (through diagnosis and the many questions). The TS Alliance has been a lifeline for me and my family! The volunteers, staff, and community give 100% to finding a cure for TSC through advocacy, awareness, and fundraising! Thank you for being the "family I never knew I needed, but couldn't live without." during our journey.

The TS Alliance has been so helpful to many parents of children and adults diagnosed with Tuberous Sclerosis Complex! We have been members of this organization for about 39 years after our son was diagnosed and we learned of the original National Tuberous Sclerosis Association. The support from their organization - through staff and hundreds of volunteers - has been personal and incredible. Everyone is working for a cure, but also for research for better medicines to help with the various symptoms.

The National Tuberous Sclerosis Association Inc has been instrumental in many ways for my family. As a parent of a child with Tuberous Sclerosis Complex (TSC), the services provided have helped me navigate medical treatments for my son as well as provided valuable emotional support as a caregiver. Without their help, I do not feel my son would be where he is today. I am eternally grateful for everything the National Tuberous Sclerosis Association Inc provides to the TSC community.

My nephew is 6 years old. He was diagnosed with Tuberous Sclerosis within days of his birth.
Since his diagnosis, the TS Alliance has been an invaluable source of information, connections and support to my family. With a rare disease, it's wonderful to know where to reach out with an issue or question.
Thank you TS Allliance!
Sincerely,

Keri Moore

The TS Alliance has been a lifeline for my family. Always a great source of support and information. The life of a special needs family, especially one with a rare disease can be so isolating. It's been so powerful and meaningful to have the connection to others who get it.

We found the TS Alliance soon after our sons diagnosis in 1997. Our involvement with the alliance has changed our sons life as well as our family. We are forever grateful for the help they gave us and so impressed with where the organization is today. I was on the board for 7 years to try to give back. And recently have joined the Endowment board. Lets keep it going as we work towards a cure while improving the lives of those affected.

I have followed the incredible growth and successes of this organization for many years. Two years ago I was asked to join the foundation board and since have continued to be impressed with breadth and depth of the organization. The passion and commitment of the leadership, staff, and hundreds of volunteers is evident in everything the organization does. TS is a very difficult and challenging disease and impacts each individual differently. There are no easy solutions ... yet . I have served on the boards of many non profit organizations and TSA is by far the best in my experience.

The TS Alliance is AWESOME! They have offered so much support and guidance through our son's two brain surgeries and multiple therapy changes. The seizures haven't gone away - nor has the TS Alliance! They have been with us through thick and thin and we have made incredible connections with other families through this amazing organization!

The TS Alliance has been an invaluable resource for my family. We have a son that was diagnosed with TSC as an infant. This was terrifying and we felt very lost. Thankfully, we were guided to the TS Alliance, which has been an amazing resource for the most up-to-date scientific/medical information regarding TSC and an enormous help with navigating the school system to get our son the support he needs. In addition, the Alliance coordinates an amazing government advocacy program, which has resulted in millions of dollars in government research funding. The Alliance has also itself raised enormous funds for scientific research, already making a huge impact on the trajectory of the disease, and is committed to doing so much more. The staff there is always doing what it can to help families impacted by TSC, and we are hugely grateful!

I have been connected with this organization for 13 years. They have been above and beyond supportive and helpful to our family.

I called the TSC headquarters in hopes to get help for my loved ones who are suffering severe abuse and mistreatment at the hands of TCS Alliance doctors in Southern California. My Daughter was brutalized and what did the TSC alliance say to me? These doctors make us a lot of money, there is nothing we can do. My daughter has suffered unspeakable acts of abuse and brutality by TSC doctors, and no one helps because of how much money the drug they push makes the hospital and alliance, The consumer is not priority here, profit is.

The TS Alliance is the very best of what a rare disease organization can be. They provide amazing support and educational resources to families like mine (we have a 12 year old son with tuberous sclerosis), AND are actively working through so many avenues to find treatments. Thanks to the Alliance, there is an ongoing clinical trial to test a treatment that can prevent devastating seizures in babies, potentially changing the whole course of their lives. Our family doesn’t feel lucky to have been hit with tuberous sclerosis, but we DO feel tremendously lucky to have such a first class organization helping us and other families like ours - for now, and for the future.

The TS Alliance is making a huge difference in the lives of so many people because of the organization’s dedication to research, making connections, and their focus on those affected. I have greater hope for the future because of them!

Soon after my son was diagnosed we found the TS Alliance via a google search. Because of the alliance my son was able to see a dr who specializes in TSC within days of finding the them. We were connected to a volunteer who had walked the same path as us and gave us support and invaluable information for our journey. Because we were connected to the clinic, my sons Infantile Spasms were noticed immediately and he was able to receive a life giving med.

This organization is a tremendous resource for the TS community they serve.

The TS Alliance is a fantastic organization that continues to help families on a daily basis, spreads awareness, leads government advocacy efforts, and is constantly fundraising for critical research to find a cure for TSC! They are an amazing organization that always provides many resources to the community. They work closely with volunteers. We are so thankful for this nonprofit organization that gives our family hope!

Being in Alaska, it's easy to feel isolated and difficult to find adequate resources and care for my daughter with TSC. Enter the TS Alliance. They put me in touch with other parents and introduced a support network of amazing people to help. I would be lost without their resources, knowledge and most of all EMPOWERMENT to make you feel you have a real voice in helping those affected with TSC.

In 2016 my great grandma passed away from kidney failure. She was 84. I told myself I was going to do more to help find a cure. I did the TSC walk a month later in Scottsdale and became the Adult Connect Volunteer. Last year I got my VNS and they’ve done nothing but answer my questions as far as statistics, help me figure out whether I should start seeing specialists or go to a clinic in Phoenix. I just wish I could do more. If money wasn’t an obstacle I would devote my life to help this organization.

The TS Alliance was a huge blessing and resource when my granddaughter was 1st diagnosed and have continued to be!

This organization has been a staple in my life for 11+years since my son was diagnosed at 9 months! They have so much information and so willing to help!

The Tuberous Sclerosis Association has helped support us through this disease. The education provided is invaluable. The support given would never be able to be repaid. I am so thankful for all the the TS association has done for families, research and education.

WE love the TS Alliance, they are truly committed with us the patients and relatives to help. They are truly committed with the community. They are working so hard. There is not enough words to thank them.

This charity has been a complete blessing for our family when our little girl was diagnosed! We are thankful for everything they have done for us!

The TSC Alliance does not only support people affected by TSC, but promotes and facilitates international cooperation, and provides vital resources for new TSC organizations in other countries. Keep up the good work!

My son, Joel, was diagnosed with Tuberous Sclerosis Complex when he was 7 months old. I discovered the TS Alliance website a few weeks after receiving Joel's diagnosis, and I instantly gained a community of support. Joel is now 6 years old, and the TS Alliance continues to be the greatest resource for educating myself and others about his disease.

TS Alliance has a fantastic mission and helps a very deserving group of people. The staff and leadership are first class and I know every dollar I give is being used to the max for mission.

The Tuberous Sclerosis Association has been an incredible resource for our family in a very challenging time in our lives. And, they continue to be a great resource and to do the good work of spreading awareness, advocating for us and helping to raise funding for research.

My son was diagnosed in 1997 and every since then, the TS Alliance has been a source of information, support, research and hope for our family. Our lives and journey with tuberous sclerosis complex has been greatly enriched by this worthy and responsible organization, and we are grateful.

As an individual with TSC, I have been both the beneficiary of the organization's research initiatives and educational programs as well as an enthusiastic volunteer helping it achieve its mission. It is quite remarkable to consider the achievements realized in the 40 plus years of its existence with the discovery of defective genes responsible for this disorder along with treatments to make the disease less burdensome. While no one would ever TSC on anyone, this group does so much for its community to make living with TSC more manageable. It is my ongoing honor to be involved with an organization that makes such a difference to those whose lives are affected.

Hearing the diagnosis of tumors growing in your child's body is one of the scariest moments in your life. The Tuberous Sclerosis Alliance was there to educate and support us when we didn't know where to turn.
The Tuberous Sclerosis Alliance keeps us informed on information, treatments, and ongoing clinical trials. We don't know what we would do without their information and support.

Our daughter was diagnosed with TS at age 5. The TS Alliance has been a lifeline of support, medical research, education for teachers & medical personnel. They have helped parents advocate for their children in schools and financial resources. The staff is professional and always friendly. They have a wealth of published materials, much in Spanish also. they have helped us parents & grandparents to raise millions of dollars for research, and helped parents plan for care for a dependent child after the parents pass on. The director Kari Rosbeck is a tireless lobbyist, traveler, and promoter. God bless the TSA for all they've done!

Everyone there is like family! They go above and beyond to help our community! I couldn't ask for a better group of people to have on our side!

My involvement with the Tuberous Sclerosis Alliance started when I learned about a co-workers daughter that was diagnosed with tuberous sclerosis complex. I started volunteering with their annual walk and continue to help where ever I can. The employees and volunteers at the TS Alliance are very welcoming and quickly feel like family. Each and every person I have come in contact with truly focuses on helping others and improving the lives of TSC patients. They work hard to make sure that finances are focused more on activities such as outreach and research than on administrative costs. I know my time spent with this organization is for a great cause that truly cares about and gives back to the TSC community.

Always delivers solid information that is site sourced and current. Provides expertise and depth on a subject that is often not covered in mainstream media. Has done an outstanding job in shining a national spotlight on a disease that is confusing and heart wrenching in its complexity.

The Tuberous Sclerosis Alliance has accomplished amazing things for patients and families. For an organization tackling a rare disease, they function like a large, sophisticated organization, allocating resources, education and programming toward initiatives that truly make a difference. They are funding innovative research for a better tomorrow, while providing support & education today. Look no further than its TS Awareness Month campaign, local education events and walks, and recent Infantile Spasms Awareness Week campaign to see how impactful this organization has been and will continue to be. Great leadership.

When my baby was diagnosed with tuberous sclerosis, the Tuberous Sclerosis Alliance was there for us from day one. Their staff sent me long emails answering any questions I had, their website has really helpful information, and they seem to care so much about the people affected by this disease. I've worked in nonprofits for 10 years, and this is a top-notch organization.

We're from Israel and thanks to Tuberous Sclerosis Alliance helped we found specialist at USA that has helped us virtually. We learned a lot about the rare disease from the comments from others on the FB and TSA page, they are doing an amazing job. From them we've learned about Affinitor even before it was approved at 2014 in Israel and about Rapamycine that is not in a use here for AML in TSC and thanks to it(!!!!!) she is on Rapamune now since got refuse for Affinitor. She's a firstpatient in Israel who's using Rapamune for AML.
Thank you TSA Alliance , you are the best!

This non-profit has answered the calls of any scared parent (me) when we just need to talk to somebody while we deal our baby's seizures or watch them rock and stare blank out into nowhere. They help reassure us as we do what the doctors tell us to and offer to mail out and now email or fax information to us with further explanations, opportunities to learn and to ask questions. They listen to us sob. They invite us to incredible seminars where experts in the medical field and researchers all share the same dinner table with the families coping with TSC. These people assist us in fundraising for a cure. They direct us when advocating for our child's rights and ours within the schools, the community, and other temporary misunderstandings. The TS Alliance never lets us feel alone in coping with this disease and all that it entails. I was a young mother of just 21 when I first spoke to them- before the internet and before most Dr.'s spoke to me like an adult mother that knew her baby. The TS Alliance had an 800 number with people that have always treated me with respect, care, and empathy. They were incredible then and are today. More than once they have been like a lifeline to our family. Thank you.

My brother is 62. The Tuberous Sclerosis Alliance helped me find a specialist for him outside the State of New Mexico (were there are none). I learned a lot about the rare disease from the comments from others on the TSA Facebook page. Michael is now off the meds he had been on for most of his life and on medications that are much, much better. After years of being told that nothing more could be done for him, I found there was. More treatments have been discovered in the past 10-15 years thanks to the efforts of this nonprofit!

The TS Alliance is a wonderful organization and has been very helpful for our family. My son has tuberous sclerosis, and we have found excellent treatment options thanks to information provided by the TS Alliance. They do great work!

TS Alliance has been an incredible help as we care for our daughter with TSC.

This is the first resource I found after our granddaughter's diagnoses at age 3. It has allowed me the tools to share awareness with others, including pediatricians who missed every physical sign. We are proud to donate to this organization.

My 22 year old daughter has TSC. We have utilized the services of TSA her whole life. We are grateful for their continued assistance through the maze of the complications of TSC

There are few organizations like the TS Alliance. Ethical. Focused. Educational. Caring. As a Mother raising a child with TSC, the resources available through this amazing group are countless and appreciated more than they will ever know. Thank you TS Alliance.

We found out about the TS Alliance after our daughter was diagnosed at 3 months of age. We immediately scoured the site for information and joined the inspire chatroom.
If not for the TS Alliance, we would have felt lost. I have called in panic and have been helped in such a gentle manner. Tuberous Sclerosis needs an advocate/charity/resource because of its nature and effects on so many organs and other conditions.

I am so thankful the Tuberous Sclerosis Alliance was there after our daughter was diagnosed nine years ago.

The TS alliance is a great association! My daughter has been recently diagnosed with TS and it has been a wonderful recourse. With TS being such a unknown pain in the butt its great to have the TS Alliance!

TS alliance is an amazing wealth of knowledge and support!!

My son was diagnosed with Tuberous sclerosis at birth. The TS Alliance has helped me in more ways than I can count. Because of a video they produce on Infantile spasms, my son was quickly diagnosed and received the correct treatment. They guided me to the wonderful TS clinic I take my son too, and have helped us get into research and drug trials. They are a wonderful organization, always there when I have a question or I need guidance!

The TS Alliance is so important to us. Whenever we come across a doctor that doesn't know anything about TS, we send them to tsalliance.org - there is a special link for doctors. This happens more than it should. It was THE PLACE we went to after my son was diagnosed - I have spent hours and hours on their page for the newly diagnosed. It has also been invaluable for us helping his teachers understand the disease, as there is a special link for teachers, as well as information about IEPs. I can go on and on... We would feel pretty lonely and helpless in this disease if it weren't for the TS Alliance. Thanks.

My daughter is 50 years old, she started having seizures when she was an infant 4months old. She had several of the characteristics of Tuberous Sclerosis Complex at birth but not diagnosed until she was 16 years old. We became aware of the TS support group in the following years. Since then the organization has grown tremendously to not only offer support and education in local groups,but we are involved as volunteers with the greater Chicago alliance walkathon to raise money for research . My younger daughter is a board member and my husband and daughters stepdad, is on a related board. We have gone to Washington DC in the past few years to advocate for federal funding for research. We have learned so much about TSC and are grateful to be able participate in the efforts to support individuals and families with this rare and complex disorder.

When my son was diagnosed with Tuberous Sclerosis in 1974 I finally had an answer to his multiple problems but no where to turn until I found the TS Alliance. I was a single mom of three with little income and was unable to send the Alliance much money but I kept getting their newsletters. Over the years exciting news of research findings were presented which gave me hope. And information on unknown possible ramifications of this disease would be exposed that would aid in communicating with his doctors certain tests that may be needed. The Alliance informed of new drugs being used for seizures and most recently the drugs used for shrinking AML kidney tumors. I broke down in tears when the Alliance hosted a webinar on the use of the drug Afinitor. This drug was being considered for my son and I was terrified. I was able to submit my questions to the doctor on the webinar and came away feeling confident that my son could try this drug. He had great success with it shrinking his kidney tumors and is being monitored. This could not have happened without the TS Alliance.

Our son was diagnosed at 18 months (in 2008) following several seizures. Before his diagnosis, I had never heard of Tuberous Sclerosis before! With help from the TSA, we were able to navigate finding top notch professionals and services that would help support our son. In addition, we have been able to connect with other families in our community and state (and out of state) to provide support and develop relationships with. The TSA has been a tremendous help in advocating for my son's diverse needs.

My granddaughter was diagnosed at birth, and at the time I never heard of tuberous sclerosis...
our family had to learn quickly and well about this disease, and how difficult it is to deal with ...
the National organization was very helpful with websites, and support to connect with other families and creating and international community via the web.
Emily is now nearly 25 years old, and even tho she still has seizures and other symptoms, we are a very different family in cohesiveness, empathy and understanding towards all people with special needs.
we now have annual fundraisers locally and internationally and I don't think we could've learned and done as much as we did without this wonderful organization... I feel grateful each day for their existence.

Our little grandson was diagnosed with TSC shortly after birth. At that point I was impressed with the Tuberous Sclerosis Alliance and found them to be very helpful. Since then, I have had the honor of being able to volunteer (in several capacities) for the organization. I am so impressed with the staff, some of the most dedicated and passionate people, I have ever met. Not only do they help families in a variety of ways, finding physicians, helping navigate the schools systems, lending support, etc, the entire organization is driven to find a cure for TSÇ. When it comes to the goal of finding a cure, these people are unstoppable!

My son was diagnosed with TSC in 1995. I had been a Pediatric RN for 10 years. I had never heard of TSC. Our doctor only had 1 page of information. He gave us the number for NTSA, and the information we received was so wonderful! It so great having an organization like NTSA that helps parents understand what's to come for our children with TSC!

In the early 1990s our son was diagnosed with Tuberous Sclerosis and we felt the fear and devistation of this news. Mainly there was no one who could explain with any reasonable authority what this meant, what to do or not do. It was then we first reached out to a TSC clinic. It was there we found compassion, and understanding. Not only did they make their time available on a Saturday, but all the doctors, nurses, and volunteers were so very helpful and approachable.

TS Alliance has been a wealth of resources and knowledge to me since my son was diagnosed at the age of 2. For the past 7 years, TS Alliance has educated school staff and has aided in his IEP development. As well as educating family members, caregivers, and his family physician. I am so grateful for the resources from TS Alliance, without them I wouldn't be as effective of an advocate for my son.

Our son was diagnosed with Tuberous Sclerosis Complex in 2007. We were informed, supported and welcomed to the community by the then Tuberous Sclerosis Alliance...wonderful staff, detailed, up to date information, print outs for doctors, parents, teachers and therapists. They are a full service operation that never gives up on supporting families, looking for a cure and informing the public about this awful disorder.

My son was diagnosed with TS in 2003. The TS Alliance was key to provide us resources in order to learn more about our disorder. They have top notch physicians and researchers who are continually identifying new therapies for our children. Recently, our son was diagnosed with hydrocephalus and the local hospital wanted to do immediate surgery. With the assistance of the physicians associated with the TS Alliance, we were able to begin medication which has eleviated the fluid on his brain without surgery. All of this was due to such a top notch group of people and the financial support that is attributed to the TS Alliance. In addition, we appreciate the family support in our local market. Keep up the good work!

I would be floundering in an ocean of ignorance about my disease if it wasn't for TSA. Tuberous Sclerosis Alliance led me to the best doctors I needed to treat my various conditions due to this disruptive disease. They directed me to the Inspire website where I have found comfort and knowledge from others who have it. TSA has provided conference calls so adults can learn more about TSC. If it wasn't for TSA I would have no understanding of what I had been dealt with. I am so grateful to TSA.

I have had the honor to become involved as a volunteer for my local chapter and to attend the annual March on Capitol Hill for funding. The Alliance gives us so much hope for the future of our children. It is a great resource for information and assistance.

I am so grateful for this organization. They have given us support and information as well as a kind friend to help navigate through this disorder. We would not be where we are today and have achieved our successes if it were not of the support of the TS Association! Thank you!

What a wonderful organization! TS Alliance provides endless support for all those seeking it. My nephew has TSC and this organization has been an amazing source! Thank you!

Thank you, Tuberous Sclerosis Association for all the guidance and support...... for my precious grandson, who is afflicted with TSC2. I am hopeful for a brighter future for these children!

As the father of a son affected with TSC the TS Alliance has been a tremendous resource to our family. The group is comprised of passionate individuals who care deeply for improving the lives of those affected and ultimately finding a cure. They are truly inspirational.

I had never heard of Tuberous Sclerosis before my son's diagnosis. I was at a complete loss about what it meant for him. Our neurologist put me in touch with the Tuberous Sclerosis Alliance and I was so impressed upon first reaching out to them that I immediately offered to volunteer in whatever capacity I could. It has provided me a wealth of information and connected me with a community that provides enormous support to those living with TSC. I can't express just how much this organization means to all of the families it helps.

I honestly had never heard of Tuberous Sclerosis before my husbands cousins son was diagnosed with it. I started reading up on it and I was amazed at how many strong and brave families that deal with this disease. Myself and my family had the honer to be a part Evan's Army and to be able to be a part of the walk that took place on May 18th. The park was filled with amazing families. I pray that new technology and research will bring answers will help to find a cure. I look forward to supporting this disease in any way possible.

I hadn't ever heard of tuberous sclerosis when our son was diagnosed at 3 weeks of age. I remember being in shock upon receiving this diagnosis. I visited the Tuberous Sclerosis Alliance website almost immediately and had no idea what our future would hold. I remember reading through resources for the newly diagnosed and printing off a notebook that would help me organize all my son's medical care. I still use the notebook today, four years later. The TS Alliance has continued to provide invaluable resources as we navigate our lives with TSC.

Our son was diagnosed with TSC seven months ago at 3 months old. The TS Alliance has proven to be an excellent resource! They provide a wealth of information about treatments, research and a future full of hope for those living with TSC. Being able to connect with others who are going through similar experiences is invaluable! Thank you TS Alliance!!

My Name is Angelika Kodat and I am the Vice Chair of the German Tuberous Sklerosis association ( TSD eV ) and I am also the president of the new European TSC Association ( E- TSC ).
I am a mother of 4 children ( two Girls and two Boys ) , the 2nd has TSC. The children are between 22 and 17 years old.
I am involved with the TA Alliance since 2006. They all are doing a great work for all the TSC affected People around the world. That`s why I make so much contacts in Europe to be stronger against TSC. And now we have E-TSC. Thank you so much TS Alliance for your well example!!!!
With the contacts around the world, specially with the US and almost the CCHMC in Ohio (Prof. Franz and his Team ) . Then there is Katie Smith, a wonderful Person and a wonderful friend to me.
My daughter Anni had a very strong crisis 3 years ago. And without the contact to David Franz and others we didn`t manage it. Now she is 20 years old, seizure free and I am so blessed for the TS Alliance ( Katie Smith ) and Prof. David Franz. Thank you so much for your help in that worse time!!! That is Support around the world against TSC, . We are helping each other at each time ( think about the time difference). I am glad to know so much members of the TS Alliance and around the world. Thank you!!
Angelika Kodat
Vice Chair of the German Tuberous Sklerosis Association ( TSD eV)
President of the European TSC Association ( E-TSC )

Our forty-nine year old daughter developed the symptoms of TSC within six months of her birth; white patches on her skin, sleeplessness and infantile spasms. The only anti-convulsants at that time were phenobarbital (which produced a paradoxical effect) and the phenol-hydantoins which did little to control the multiple daily episodes. In her mid-teens she was finally diagnosed by a neurologist familiar with the disease and also with the organization of Tuberous Sclerosis Alliance. We started attending meetings in the Chicago area and joined the TSA shortly there-after. What a blessing this has been. The dedication to helping patients and families is so apparent and appreciated. The active fund-raising and lobbying for research dollars is on going but most importantly to us, the patients and families, is the constant sense of progress and hope for a cure. Can't say enough about the Staff and Board of TSA.

When my daughter was diagnosed in November 2012, the Tuberous Sclerosis Alliance was our first source of information. Given that we had never heard of TSC before I couldn't believe all the information and resources that were available on their website. Everything we googled brought us right back to the Alliance. They have been very responsive when I have emailed or called. They are cutting edge in the way they deliver information and get people involved. I have been impressed with their creative fundraising efforts. In short, they have been a life saver during a very stressful time. I wish every disorder and illness had this type of organization for parents. Really top notch!

It's an amazing organization. Parents from around the country have come together as a result of the organization, raising awareness, moving us one step closer toward a cure, and offering hope and support for parents whose children have been newly diagnosed. Information is available, and patients and their families can get up-to-date information easily. I now live in Japan, and parents are isolated and must leave everything in the hands of doctors, who often know little about the disease.

TS Alliance is the world leader in patient organisations for Tuberous Sclerosis around the world.
Not only do they support families all around the USA (as the other reviewers highlight), they also take a lead in driving the international research agenda forward through securing funding, co-ordinating scientific advisory groups and hosting key research conferences. This work benefits not only Tuberous Sclerosis, but also research into epilepsy, autism and even cancer.
On top of this, TS Alliance has been the key organisation strengthening TSC International, the worldwide organisation for tuberous sclerosis patient associations. This work strengthens and builds the capabilities of TSC organisations all over the globe, benefiting the 1 million people world wide affected by Tuberous Sclerosis.

When our daughter was diagnosed at months with TSC the Tuberous Sclerosis Alliance was a tremendous help in terms or providing us with the resources to understand and cope with the challenges ahead.

The Tuberous Sclerosis Alliance has provided so much to me and my family in the last year. My four year old was diagnosed with TSC and I thought it was over for him. Everything I searched was worst-case scenarios and I just couldn't wrap my head around the new direction of our lives until I found the Tuberous Sclerosis Alliance. This is where I found reliable information that assured me he was going to be the same little boy, but with new obstacles. This is where I finally realized that the disorder manifests differently for almost every person who suffers. When I finally found the courage, the alliance is also where I found others like me--moms who just want the very best for their children. Once he started school, I once again turned to the alliance for information I could pass on to his teachers. The Tuberous Sclerosis Alliance has provide me with invaluable resources and support throughout our short journey. I look forward to giving back in the future, when I am the veteran who has been there and done that. I look forward to getting involved in educating the public, fundraising, and providing support to other families looking for peace of mind the alliance has been able to provide me.

The Tuberous Sclerosis Alliance has been my life line to the many struggles that our 15 year old daughter has had to endure. I was first introduced to them at the National Family Conference in San Diego. This conference changed my life as I now know it! I have been involved with the alliance ever since and have helped raise money and awareness in any way I can! The Tuberous Sclerosis Alliance has become my second family. They are always there if I need a shoulder to cry on, a resource for my daughters education and are as compassionate about this disease as we are! I feel that they have helped me along the way in accepting this disease as it changes from day to day! There are so many reasons why the TS Alliance is what it is today but I have to say that it is because there are so many genuine caring individuals all fighting for the same cause! I feel that my daughter was given to me for a reason and that is to help others fight against this terrible disease and the Alliance has and will be there with me to the end!

When my daughter was diagnosed with TSC I thought my world was coming to a end. Finding TS Alliance help me find the way for a better life for my daughter and my family. It was a great resource for accurate information and ability to connect with others going through the same thing.

The Tuberous Sclerosis Alliance began playing a role in my family's life in May 2012 when my unborn nephew was diagnosed with TSC. I cannot say enough great things about the support, knowledge, comfort and friendship that they have provided to my sister, brother in law and nephew. All of this was also felt by my family and our friends at the TS Walk last weekend. I'm hopeful that with the TS Alliance at the helm, we will find a cure for people living with TSC, especially my nephew!

I am a mother of two children with tuberous sclerosis complex also known as Tsc. Life is very hard on my family. We are always at drs appt and running test on the girls. We have had several bad seizures due to Tsc. Tuberous sclerosis effects both my girls in the brain,kidneys,heart,skin and eyes. My older daughter suffers with seizures that makes her also have learning problems, add, anxiety and sleeping issues. Everyday is like walking up to the unknown. There seizures can happen anytime and just one set back takes a whole on our family. The Tsc website has been a life saver for me. It helps me with finding out info and new med for the girls! Just having this website has been such a help. The TS Alliance is great

I am a mom to a daughter who is now 8, but diagnosed with Tuberous Sclerosis when she was only 6 months. Although our doctor knew to diagnose her, he did not know that much about Tuberous Sclerosis. While he searched for someone to help us out, we found The Tuberous Sclerosis Alliance online. It was a gold mine of information. Immediately, we started learning as much as we could from their website. The first thing we did was to find other people with children affected with Tuberous Sclerosis. They were lifesavers for us. We didn't know what to expect or what our lives would be like. But we found a community that was open and honest and there for us in the middle of our darkest nightmare. Then, through the website, we found an amazing specialist. We found out all about the right questions to ask and the right tests to ask for. Now, our daughter is doing quite well and we LOVE our doctor. Several years back, we were able to attend the Tuberous Sclerosis National Conference in Chicago that was put on by the Tuberous Sclerosis Alliance. This was such an amazing time for us. We learned so much about doctors, medications, treatments, and research from the top TS specialists from around the country. And we met some amazing people. I am close to many of the people I met there and online through the TS Alliance. Without the TS Alliance, our home would be a lot different. The TS Alliance taught me about the facts, not the rumors, about what this disease meant for our daughter. And most importantly, the TS Alliance provided us with the one thing we couldn't face this disease without: HOPE.

My daughter was diagnosed one month ago after a seizure left her lifeless in her crib. At first when received her diagnosis, I was afraid to "google" and find scary things that would make me feel hopeless. A friend suggested I reach out to the TS Alliance and I am so grateful for them. I am learning a lot and because of them, I feel like I know more than some doctors! I can't wait to run in the 10k run that will be in our area this November, I will strive to help raise money and awareness for this alliance.

Since our daughter was diagnosed with tsc at age 14 in 1993, the TS Alliance as provided our family with information and a caring support community. We are blessed to be able to give back to that community.

I have three kids, a husband, a sister in law and her two children, all with Tuberous Sclerosis. I do not know what I'd do without the Tuberous Sclerosis Alliance. I have been learning about TSC since my 16 year old was diagnosed in 1996. My husband, who has the condition, was diagnosed at the same time. Life has been a roller coaster of medical procedures, hospital stays, office visits, new medications, IEPs, and through it all, I could rely on the Tuberous Sclerosis Alliance to reassure me that I could and would meet the challenges this conditions presents, for my family. Stories of success and triumph and living with the condition as well as guidance in selecting everything from physicians to speech therapists, I found a resource! I cannot be more grateful to those who have done so very much for this organization, and as my kids grow older and they become less dependant, I hope to give back some of what has been freely and graciously given to me. Thanks TS Alliance!!!

We have a 19 year old daughter, Marybelle diagnosed with TS at the early age of 2 weeks old due to the ash leaf spot seen on her back. Her doctor was so good that at this early age was cautious and keen in helping her prevent seizure. At 18 month old, she had her 1st seizure and that was the greatest challenge in our life. She was on different medications but only when she was six years old when we found out this organization through her school psychologist. So, we attended the convention in San Diego which educate us and realize more what we have to do and know about TS. Also, we attended the Chicago convention too. We educate and spread to my family and friends what TS means. Then, when the TS clinic in Oakland California opened, my daughter's neurologist recommended us to see this clinic. For 5 years, I supported the TSA walk they do until they stop organizing this event. It was too late for me to join the TSA walk this year but next year I will do it again for my daughter and to those people who are affected with TS. With all these 5 brain surgeries, 3 face laser surgeries, VNS implant and differnt anti-seizure medications we still don't lose hope that someday we will find cure for TS.

My six year-old son was tentatively diagnosed with TSC in utero on what turned out to be the last day of my pregnancy, when a large tumor was found in his heart. To say that my world came crashing down is an understatement. My husband and I spent some time researching the disorder on the internet, and it soon became clear that the Tuberous Sclerosis Alliance was the only resource for clear, accurate and comprehensive information, from fact sheets to research articles to lists of TSC clinics to links to community support. I contacted the chair of my local chapter and within a few months had met several families in my area living with TSC, many of whom have since become a second family to me. In 2010, our local chair stepped down and I was given the honor of filling her role. The support that the TS Alliance is able to provide our community - from fundraising walks, online support groups, sibling support, government advocacy, research teleconferences and educational meetings - and all on a shoestring budget - is nothing short of astounding. Recently I was able to observe a board meeting, and I was truly impressed by the complete sincerity and utter commitment of its member to fulfilling the mission of the TS Alliance: finding a cure for tuberous sclerosis complex while improving the lives of those affected. In my opinion, the TS Alliance is the very model of what a rare disease organization ought to be.

Our son was diagnosed 23 years ago, when little was known about this disease. We didn't have a gene marker (let alone 2) for the disease. We had no idea what the impact of the disease might be for our son. Most of the doctors we saw knew as little as (or less than) we did. The TS Alliance has been a long-standing source of expertise and advocacy for our son and our family. We have benefitted in many ways, the least of which is the Alliance's commitment to research and bringing new knowledge and expertise to this disease. We are forever grateful.

I have been associated with the Tuberous Sclerosis Alliance for 9 years. I joined because my grandson was diagnosed with the disease. I am now a Board member. I ave seen major improvements of this organization under the leadership of its Executive Director. We had to reorganize several times and had to relieve staff to achieve our goals. The Board works closely with the President/Executive Director to ensure our financial data is nothing but perfect. We have had to cut back at times on expenses to meet our budget. There is an aggressive fund raising effort as well as seeking foundation grants. I am pleased to see this organization constantly improve itself. it has offered advice to those families that have a child or an adult with TSC Theodore Mastroianni

This organization was our saving grace when my daughter was diagnosed at 9 months old. Our daughter's first dr, told us the probable diagnosis and then told us not to research it on the internet, making it sound like there was no hope. I didn't listen to his advice and quickly found the TS Alliance which gave us hope for our daughter's future. The Alliance has provided us with guidance, community, the latest research, and most importantly hope. It has been our guiding light throughout our daughter's 11 years dealing with this condition.

I was struck to read the messages from the early years who are still committed to the larger community of families with tuberous sclerosis complex Over the past forty years his organization has demonstrated an unrelenting commitment to change the course of the hardships faced by us all. I will always be grateful to each and every family member, volunteer, friend, staff , physician, researcher and the community. Yes, I recall realizing when my daughter was diagnosed and I was faced with all the unknowns of our future, that I would need a community to help her and all of the families.

Our daughter was diagnosed in the late 1980's and the help of the National Tuberous Sclerosis Association was invaluable! We have gained a great deal of knowledge and support from the TS Alliance network. It is wonderful to see the organization grow and continue to build strong relationships with families involved with tuberous sclerosis over the years! Thank you to all the dedicated staff in the national office and all of the professionals and volunteers that make it happen!

I was in contact with my dear sister when her firstborn child first had seizures and she didn't know what could be causing them...was with her through the long dark days when she frantically looked for help and found only ignorance and discouraging pessimism among doctors...and, as the wife of a special ed. teacher, I knew about the magazine called EXCEPTIONAL PARENT, and encouraged her to write to them. She did, and the rest, as they say, is history! I have watched how this organization, that she and the other 3 moms she found in California started, has grown and helped countless families worldwide. I know how much it meant to her and her beautiful daughter as their family struggled for 31 years to give their one TSC person as full a life as possible, in spite of her terrible disease. And all the while my sister has worried that her other 3 children might also develop it, or if not them, maybe their children...because so little was known about the cause or treatment. Now that worry has diminished at least, because so much progress has been made by dedicated medical scientists and doctors, with the organized help from all those motivated parents and families, and lots and lots of volunteers who have been enlisted in their cause. And as a person who works with medical scientists, I know that every breakthrough in one of these genetic diseases has an impact on many others--including cancer, autism, Parkinson's, multiple sclerosis, and Alzheimer's. Someday this growing body of knowledge is going to make cures and treatments available for many more people beyond the TSC community, too. It already has advanced our collective understanding enormously, and the influence grows exponentially. This disease that was once thought to affect so few people that it "wasn't worth studying" has turned out to be the impetus behind so much positive change for so many...surely there is a lesson there for the world, on so many levels!

Without the TS Alliance (formerly NTSA), me and my husband would have been lost in fear and ignorance 15 years ago when my then 6 month old son was diagnosed. Never heard of this disease and felt completely alone, lost, afraid. They are there whenever we need them, so we are totally involved with their volunteer work as they need us. How great it is for us to have somewhere to turn for answers, community connections, people who walk in our shoes. I personally would not know what I would do without this organization!

At the time of diagnosis until recently was the only place to get update information. To read the experience from other parents gives us the knowledge what to expect and ask from non experienced doctors. Very crucial place for this rare disorder.

I was diagnosed with TS in my 20's nearly 20 years ago by a dermatologist in California. It was a bit scary as the dermatologist pulled together seemingly random birth marks and skin abnormalities then brought me a big medical book with a shocking pictures and information of disease in the book he said it looked like I had. I looked at the pictures and saw many images that looked like my skin, but worse, and other things that didn't. I also read that there were more serious symptoms like seizures, organ failure issues, and mental delays. We scheduled a scan of my brain and discovered I had calcified lesions which indicate there may have been issues as one point, but not anymore and at age 20+ most likely they would not become active again. I was just finishing college and moving from California to Texas and he told me to look up the Tuberous Sclerosis Alliance when I got there and I did. I discovered that TSA maintains an amazing website to help inform TSC individuals, their families, and their doctors understand the symptoms of the disease and the current screening recommendations based on top researchers. This has been very helpful to me as many doctors are not that familiar with TS and most of the time seem to pretend they know it, but you can sense they don't, and when they look it up in their books and other tools sometimes they have old information about what the best options for you are. I know this doesn't mean they are bad doctors, but it means that the information that TSA provides is critical to guiding your doctors to provide you with the best medical care they can. This is a key point for me, but TSA also offers much more, such as information on NIH studies for TS and TS related issues. I was part of a study once too and when I came home one of the people at the TSA found out I'd been there and told me how much she'd wished I'd told her as she would have come to visit me. That was when I realized that from the national to the local TSA was a family of people who really care. It has been a privilege and an honor to know and be part of this amazing group of people, and help in small ways by providing an example to TSA parents of the mild end of the spectrum of this disease, and to be part of sharing with other adults our experiences. I continue to see TSA as a key life raft that is big enough for everyone and open to anyone anytime and that is there for me whenever I need it and with real people on it ready to help me and others in any way they can. It is very special and thinking of it now I have a nagging worry that it is rare and not all people are lucky enough to have that kind of support.

The National Tuberous Sclerosis Association (aka, TS Alliance) is a wonderful organization. They have a wealth of information for families effected by TSC and those working with them. The people with the organization are incredibly helpful, friendly, and compassionate, and are more than willing to offer one-on-one assistance to families needing help in any area (medical info, educational advocacy, etc). The website, the Facebook group, the Inspire community forum, the magazine, the fundraising campaigns...every thing the TS Alliance does to reach out to the TS community is great!! Always on a personal level. The TS Alliance also plays an important role in research and in accrediting TS Clinics. My oldest daughter, almost 5 now, has TSC1, with cortical tubers on her brain & AMLs in her kidneys. She has fought the worst odds and always come out on top, and always kept a beautiful smile on her face. When my daughter was diagnosed at age 2.5yrs with TSC, our neurologist, as well as our family doctor, referred us immediately to the TS Alliance website for more information. We have used the fact sheets and other information many times over, in only the past 2.5yrs, and as we did this week when the kidney AMLs were discovered, and will continue to as our journey continues. We know that they are only a message or phone call away if we need assistance on a more personal level. We also know that they'll not let us down. Cannot say enough how incredibly important the TS Alliance is to us, and to so many!!

We found the TS Alliance a few days after our 5-month-old daughter received her diagnosis. It was so wonderful to speak with someone who could talk to us about the disease and gave us a chance to ask questions. The TS Alliance also put us in touch with the regional chapter in our area, which in turn connected us to a TS specialist and network that we did not have in our own state. This connection was life-changing for our daughter! The TS Alliance website is a wonderful resource and provides a wealth of information to parents like us as well as to docs and educators. They are an invaluable source of support...and most of all they give all us hope--hope because we know we are not alone in this journey.

I was a board member of the Tuberous Sclerosis Alliance too, but I started and my heart remains with the dedicated volunteers who support the efforts of this Nonprofit. The Tuberous Sclerosis Alliance is a wonderful organization, led by dedicated and talented staff, but ultimately propelled the most by the dedicated volunteers who have served past and present. I have met so many wonderful people of all ages and involvements, whether they are an adult with TSC, a parent or a caregiver or friend of someone who lives with this illness. Not only are there successful fundraising events but there is a strong mentoring core that propel movement in research and government relations. I have received so much support through the thick and thin with my walk with TSC from so many in this organization at several different levels. But most of all I found it empowering I could learn, develop and grow as a person with the volunteer opportunities that I was offered. There is so much hope and positive momentum and I believe a lot of it comes from the partnership the organization maintains with its volunteers, but also the relationships they foster with researchers, government, and other organizations. We've seen real inroads through these efforts, and it all leads us back to the mission of the organization. A mission we all hold dear to our hearts no matter what role(s) we play at any one time. Quite impressive from an organization that just started with 4 mothers getting together trying to figure out ways they could help their children live the best quality of life possible with a sometimes cruel and relentless disease.

My daughter was diagnosed with Tuberous Sclerosis at age 8 months. Her pediatrician prognosis was grim. If it hadn't been for the Tuberous Sclerosis Alliance I'm not sure that my daughter who is now 19 would be with us today or not at least doing as well as she is doing. The organization has supported us emotional bring us together with other families locally and around the world for support. When my daughter was first diagnosed they could not control her seizures with any conventional medication available in the United States , the TS Alliance provided us contacts and information about treatments that had been very successful in Canada and Europe. We took our daughter to Canada and received the medication Sabril (vigabatrin) she was seizure free her first day. TSA was involved in the lobbying to make this drug available in the US. It is now FDA approved and is the first drug of choice for infantile spasm seizures. My daughter also has brain, kidney, facial and lung tumors TSA funds research in developing new drugs and treatments that are not only helping people with TS but people with autism and LAM. When I donate to TSA , I know I'm impacting lives.

My 21 year old daughter was diagnosed with Tuberous Sclerosis when she was 8 months old. In 1992, without the internet it was much more difficult to obtain information. I don't even remember how I discovered the National Tuberous Sclerosis Assoc., as is was called then, but what I do remember is the relief I felt in knowing that there were many others in our situation. I was quick to volunteer as a "state representative" and attended every educational and fundraising event as I possibly could. As the years have gone by, the organization has grown and their efforts don't stop. They fund research, provide family support, continue education and increase awareness. I am amazed at this wonderful group of people who continue tirelessly to raise funds so that families like ours can benefit. Thank you TS Alliance for all you have done for my family personally.

When I first heard the words Tuberous Sclerosis and was referred to the internet for my answers, I was devestated. I felt like my world had been turned upside down when two of my three children were diagnosed. So many unanswered questions that I needed answers for. Most doctors have only heard of it in med school and it is up to the parent to be educated on the subject. You soon learn that every website on the internet is not reliable. Once I found out about the Tuberous Sclerosis Alliance, it became my primary source for information because I knew that it was reliable. Additionaly it opened the doors for me to become a TS advocate that has allowed me to use my energy in a positive way by being a participant in the fight for a cure instead of sitting home and being mad. The TSA has provided me resources and support that I needed to make lemonade out out lemons. THANK YOU TSA FOR MAKING A HUGE DIFFERENCE FOR THOSE FAMILIES AFFECTED BY TS.

Almost 30 years ago, our son Jonathan was diagnosed with a "RARE CONDITION". We lived in a third world country then. The doctors referred us to the National Institutes of Health in Bethesda, MD. There we learned the name of the "Rare Condition". It was TUBEROUS SCLEROSIS. In the 80's we did not have the tools we have today, like Internet and Google. Just the Public Library, where we found the only book published. It was by the late Dr. Manuel R. Gomez, (RIP). We flew to Rochester MN where we met Dr. Gomez and his team and obtained the best care we could possibly ask for. Also we learned about the then TSA - Tuberous Sclerosis Association. The Association can best be described as a light bulb in a strange dark room. Almost thirty years ago, we felt the same warmth and compassion new parents feel as they learn of the hard task ahead of them when they discover that theis son or daughter is affected by this condition. Today, we are greatful to the work of the Association, for they are unconditionally by our side. Working tirelessly to bring families together, to share our experiences, our achievements and our goal. We are the Aizenstat family, from Miami, Florida.

I am an adult with Tuberous Sclerosis. I am mildly affected and have been blessed to share my story with others through the Tuberous Sclerosis website. The Tuberous Sclerosis Alliance provides a wealth of resources for the newly diagnosed, their families, friend, health professionals and researchers. In the past, I have shared my experiences with other adults through the TS Alliance Match program. I've also raised money and recruited others through participation in Step Forward to Cure TSC walks sponsored by the Tuberous Sclerosis Alliance. Through the Tuberous Sclerosis Alliance, I learned about Inspire.com, an online forum for individuals affected by all kinds of illness and conditions. As a member of the Tuberous Sclerosis Alliance group, I have participated in discussions and shared my experiences with Tuberous Sclerosis in a personal journal.

Hi. I am an adult with TSC and I have two children with TSC. I am mildly affected by this disease and because I am and I have daughters who have TSC I am a huge advocate for my girls and others who are effected by this genetic disorder. I am a volunteer and the chair for the TS Allliance in Indiana. The more I learn about TSC - the more I can serve those around me to understand more about this disorder. The TS Alliance has been a part of my family as the Allliance has brought so many of us together as one. So that we can learn and understand that we are not alone in this journey. The doctors who have dedicated their professions in learning and educating others about TSC to the clinical trials that have been a true blessing from God for myself. I have been so greatful and honored to have met and worked with others who have to live with this disease on a daily basis. But one must stay positive and say to oneself that God has given this gene to us for a reason. The reason for me personally is to teach others and so that others can learn about this disease. Thank you for allowing myself to tell a little bit about my experience with TSC. God Bless :)

I have a twenty-five year old daughter who’s mildly affected with tuberous sclerosis. She has a brain tumor, a VP shunt, social skills deficits and learning problems. The Alliance and its members do a great job of providing emotional support to people dealing with this devastating disease. It has also provided me with valuable information about the medical, academic and social implications of tuberous sclerosis. It’s a great resource for anyone afflicted with the disease, especially since many people are a whole lot worse off than my daughter.

The website provides the most current information for patients, care providers, teachers and researchers about tuberous sclerosis, its implications for patients, its treatment, and the ways in which patients need to be monitored. The Alliance itself conducts a wide ranging program of outreach with a network of local community alliances, volunteers who work on school issues with local Parent Training and Information Centers, and volunteers who are available to provide one-on-one support to patients and families who request it. It also supports research with a grant program that has funded more than $15 million of research since 1984, a drug screening program, and awards for innovative research into possible treatments.

I’ve been volunteering with the Alliance for about four years and have received a great deal of support for my work. I’ve met with congressional aides to request research funding and educated teachers and my local Parent Training and Information Center about tuberous sclerosis. In both cases, the Alliance has enthusiastically provided me with all necessary support and documents and made clear the extent to which they value my contributions. The Tuberous Sclerosis Alliance is one great organization.

The alliance gave me hope when i had none. They linked me with resources and real people who knew what i was going through. With their encouragement i became a fundraiser and advocate for my daughter. At times when i feel lost they give me the map.

Tuberous Sclerosis is a devestating disease. It affects every part of the body. Our daughter is severely developmentally delayed and she's hospitalized with life threatening seizures several times a year. The TS Alliance has been a source of comfort in addition to great resources. If you have a family member of friend with TS, I urge you to contact them.

We have been involved with the Tuberous Sclerosis Alliance for over 16 years. Their commitment to research to find a cure for this medical condition is unparallelled. Research sponsored by TSA has also resulted in treatments for some of the debilitating symptoms of this disease. I continue to support the Tuberous Sclerosis Alliance and its important work!

On January 15, 2008, my husband and I learned that our then two-week-old son was diagnosed with tuberous sclerosis complex (TSC). Among other manifestations, he was born with five tubers in his brain and two in his heart. Needless to say...life would never be the same again...we were devastated! After researching the disorder, we came across the TS Alliance website. For the first time in weeks, we felt some hope. The website was filled with information regarding diagnosis, a list of resources, and support. We were further impressed by the support from the staff...so much so, that we decided to volunteer and join in the mission of the organization. We wanted to ensure every newly-diagnosed family would be aware of all the assistance the TS Alliance provides. Through the TS Alliance, I am able to speak with other families who are going through the same challenges I am going through; I am able to help advocate for my son's education and ensure he has a chance for an independent future.

For the past 15 years I have known that the first place to turn for accurate, up to date information about tuberous scelrosis complex (TSC) is the National Tuberous Sclerosis Association dba the Tuberous Sclerosis Alliance. My infant son was just five months old when he began having infantile spasms - a catastrophic seizure disorder - and was diagnosed with TSC. Internet searches yielded gloomy predictions and offered little to be optimistic about or even to hope for. The staff at the TS Alliance was able to provide current treatment and intervention information as well as identify experts in the field. Today the Tuberous Sclerosis Alliance is an international leader bringing together the best researchers and clinicians in the world to further the mission of finding a cure for TSC while improving the lives of those affected. The Tuberous Sclerosis Alliance involves the individuals affected by the disorder at all levels of planning, strategizing and decision making . They offer opportunities for empowerment through the participation in clinical trials, research reviews, community outreach and support; and government advocacy. A child born today with TSC has the hope of a much brighter future because of the efforts of the Tuberous Sclerosis Alliance's staff, Board, constituents, volunteers, clinicians, researchers and communtiy supporters.

I was invited this year to a charity walk sponsored by TS Alliance. It was very well run and professional. All was run by volunteers in the local community. I was impressed with the activities, event, materials and information provided as well as the music from a professional group. We were also served great food from National Sponsor Buffalo Wild Wings. Delicious! But what made the difference for me was to meet the parents, grandparents but especially the affected children of TS Alliance. I made an online donation from my smart phone using the www.tsalliance.org online donation site. And as people passed by the event; many people stopped and made cash donations. I just cannot say enough about this event

As a volunteer for the Tuberous Sclerosis Alliance, an organization dedicated to finding a cure for tuberous sclerosis complex (TSC), I have had the honor of seeing the community come together for this cause. The organization give those who have been affected by TSC countless resources, support, hope and progress. I believe that TS Alliance is a difference for families affected by TS.

When my daughter was 5 months old she began having seizures. After many tests and days in the hospital she was diagnosed with tuberous sclerosis. My husband and I were devastated! The doctors gave us the facts and they we grim to say the least. Thank God we found the National Tuberous Sclerosis Association. They gave us help support and most of all hope! Today our daughter is 12 years old and doing fantastic!

I discovered bumps on my fingers when I was 4. I knew I was different and as the bumps (tumors) spread to my feet and then I started to get small bumps on my face, I knew I really was different. In my mid 20's, I went to a dermatologist who got a group of doctors together and said those words I'll never forget: Tuberous Sclerosis! I went to Scripps Medical Library in La Jolla,CA and this little tiny book said I should be retarded and would die at 33 and all sorts of scary outcomes. It was at this time, I contacted a doctor in LA who specialized in it and she had never met someone with TSC who had a job, drove a car and lived alone. She said I had a mild case. I moved to Seattle and met my first group of TS people and saw the varying degrees of cases! I was scared to death! Through the efforts of these first people to my testings at NIH, I discovered that TS was way more prevalent than I originally thought. I have since met my peers and the president (Kari) and traveled to Washington and I send out letters for politicians to help us find a cure. I am 56, have 5 tumors in my brain, my fingers & toes and my kidney has a tumor. I also have tests (MRIs, etc) every year to stay on top of my condition. I am so confident that TS Alliance is one of the best non-profits ever and that the work they are doing for all of us, from newborns to my age has made life more tolerable and by sharing this information with other sufferers has brought me close to people around the world. I am always willing to share my story especially with newly discovered cases in babies, talking with their parents and I am proud of the TS Alliance for being there for me all these years. Thank you. Lisa Bennett

When I was 40 weeks pregnant, my doctor ordered an ultrasound to determine how large the baby was. During that ultrasound, the technician uncovered a heart tumor (Rhabdomyoma). I was told Tuberous Sclerosis was a possibility. The prognosis I received was horrible and wrong. Thank goodness I found the TS Alliance with the most accurate and up-to-date information. Upon birth our son was diagnosed with TSC. He will be 16 in December and he is a sweet, intelligent, respectful and handsome child. We are so lucky to have found someone to give us information and hope!

I am proud to be a volunteer for the Tuberous Sclerosis Alliance, an organization dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. Even though my sister Ronda is no longer with us, I believe, in my lifetime, we will see a cure for TSC!

My son was diagnosed with TSC at age 9 months, 16 years ago this month. At first we were devastated but with the help of the NTSA we realized that this was not the end of the world. WIth the help of the group we learned about this disease and were connected to some wonderful resources. I volunteered to help with their newsletter for a while, as they were transitioning to a better one. I also am a community resource for anyone in my area who is diagnosed with this disease.

Our son was diagnosed on his 1st birthday.... 25 years ago. The physicians knew little and the materials they provided were outdated and factually incorrect. We very early on connected with what was then known as the National Tuberous Sclerosis Association. Through NTSA which is now known as The Tuberous Sclerosis Alliance, we gained access to the most current research, physicians specializing in the treatment of the many manifestations of TS, and joined a family of others who live with Tuberous Sclerosis in their lives. This condition impacts multiple body organs and systems, has physical, psychological, emotional, behavioral, and cognitive impacts -- and often those impacts are severe. One of the greatest benefits of the TS Alliance is their local conferences. Families do not need to travel hundreds/thousands of miles, spend significant dollars on hotels and meals, and arrange child care for a child (children)(for whom this can be an extremely difficult undertaking) to hear and meet with some of the leading researchers and clinicians in the country. Without the benefits and assistance from the Tuberous Sclerosis Alliance, I and many of the people I now know as friends would not be able to face the daily challenges brought on by Tuberous Sclerosis.

I sincerly dont know where my family would be without the TSA!! The support that weve recived has been never ending. When my then one year old son Alex was diaqnosed, we were thrown into a dark tunnel of fear and confussion of the unknown, let alone what this TSC even was. And less than two weeks later I was DX and then my world was changed upside down and forever. But then we found the Alliance, and what was the beginning of great experiance with what we call our second family. The alliance has opened up the opportunity for me to step up and use my experiance to reach out and share not only what TSC is but how those effected with TSC can live and have a qaulity of life unlike they probably never seemed possible giving the various manifestations that TSC offers to those who are effected by it. I will be forever gratefull to be part of such a loving, compassionate and vital organization!

The Tuberous Sclerosis Alliance is an incredible resource for all those who live with tuberous sclerosis complex (TSC). Wether you are a parent, a grand parent, a sibling, or the individual suffering from TSC, the organization has so many helpful aspects that it's hard to name them all. The Alliance has been of much help for us for the last 9 years when our youngest kid was diagnosed with the decease. They offer and excellent website were many of the answers to the more difficult questions about the condition can be found. They advocate for our kids in a way that no one else does and keep us informed of new drugs, clinical trials, new procedures for the cure and treatment of this terrible desease. They are absolutely wonderful.

The Tuberous Sclerosis Alliance has been a miracle to our family for the past 12 years. Anytime we were overwhelmed or had a question or needed to feel like we were not the only family dealing with this; the TS Alliance has been there with information and support. From conferences with international experts, to support groups, legislative groups, and the journal, it all helps. The thing I am most grateful for though is the efforts made for research. It's truly amazing to see how far they've come in 12 years. Thank you TS Alliance!

As a Grandmother of a child with TSC and living in KY it is very unknown of and with this site on my page I have been able to raise awareness about this horrible disease that affects so many I have wonderful friends that I consider to be family that have helped my family in bad times they have prayed with me for me and we have been there cheering my family on in the good times without this site what would we do we get so much important information and meet great ppl who can help us figure out and give great advice and Jay and all who work for this organization are awesome we love it !

The Tuberous Sclerosis Association (TSA) is a remarkable organization that provides guidance, wisdom,, direction, and hope for individuals with Tuberous Sclerosis Complex, a potentially devastating genetic disorder causing epilepsy, cognitive disabilities, autism, lung disease, kidney tumors, and skin lesions. The TSA has both national and international outreach and is a source of public health information, advocacy, and social connection for patients, family members, and friends affected by TSC. The TSA is also a source of biomedical research funding for researchers and clinicians to help identify new treatments for affected individuals. TSA has been a model organization mobilizing scientists and clinicians towards bold new research in TSC. It has been my pleasure to have served in various capacities in TSA (Professional Advisory Board, Scientific Advisory Board, Board of Directors) for the past decade. A truly remarkable organization.

The National Tuberous Sclerosis Association has been my lifeline for the last year. My son was diagnosed with TSC when he was only 2 months old, there was so much information to process and we were overwhelmed by the amount of information. Our neurologist recommended the TS Alliance for information, support, and resources. I check the TS Alliance website and facebook page weekly and our family has raised money on their behalf. They have helped my family and so many more, I would encourage anyone to donate and help this amazing cause!

The Tuberous Sclerosis Association has provided a wonderful support system for my family and me. My grandson, John William, was born one year ago, with the genetic disease, tuberous sclerosis. The Association was there to educate us, answer questions, listen, and enable us to share experiences with other families.

The TSA is raising awareness for tuberous sclerosis. This is necessary so that funding so desperately needed for research will be secured to uncover the mysteries of the disease. In addition, the organization’s leadership, volunteers, and everyone associated with the group are dedicated to give continuous support to families. My family relies on that support. More must be uncovered, and TSA is trying hard to do just that.

The Tuberous Sclerosis Association has given us hope that our John William will have a bright and healthy future.

Judy Fitzmaurice

The TS Alliance has been a terrific resource to those of us with friends and families impacted by this terrible disease. We are grateful to have an organization to help educate and support all of us who stand together, praying for a cure.

The TS Alliance provides support, education, and advocoacy to individuals with Tuberous Sclerosis. They also sponser research, as well as educational and research conferences. I participated with other members in advocationg for the FDA approval of a medication which is now ( it was approved) the only medicaiton for a devistating type of seizure, which many infants with TS have. The unique family support is critical to those dealing with an obsure disease such as this. The best and most up t date information about testing and treatments is obtained through the alliance.