Love the Alliance. It's an amazing org/resource for newly diagnosed and veteran families.
We never could have or would have navigated the challenges of getting the proper attention and care for our son if it wasn't for the stories and training we have received from the TS Alliance website and some of it's members I have had the pleasure of meeting over the years.
Due in part because of the work the TS Alliance had done before I was aware of their efforts, my son was able to get on a medication at 6 months old that stopped his type of seizures. This has put him on a much better path than had he not.
I got involved because if not for the many volunteers before me, we could have a much different outlook than we do today. The conferences they have put together for families and doctors have been 1st Class and loaded with information not available anywhere else in the world
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.
Our son was diagnosed with tumor sclerosis complex when he was 15 months old. Being a parent is scary but finding out you’re a parent of a special needs child is terrifying. This organization stood by our side the moment we contacted them and has continued to fight and advocate for a cure. The leaders and staff members are beyond incredible, always available to talk or connect families and tirelessly work to bring awareness and funding to this disease. I don’t know where we would be without the TS alliance and its imperative that they be there for newly diagnosed families in the future.
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.
I have been involved with this organization for the past 35 years after my son was diagnosed with Tuberous Sclerosis Complex. I have seen it evolve over the years from a "parent support" group to an organization that is committed to helping TSC patients and their families and to finding a cure for this difficult disease. They are a great organization! Their President and her staff are all great workers who put in 100+% to helping our cause!
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.
As a parent of a child with Tuberous Sclerosis Complex (TSC), I found the support I so desperately needed from this organization. The fellowship received from those who share a similar journey allowed me to flourish as a mother, an advocate, and a mentor. The leadership of this organization drew me to volunteer to host events for others on the TSC journey and to advocate for research funding. Knowing this nonprofit organization started with just 4 mothers 45 years ago who aspires for fellowship, education for doctors, and better treatment options for their children, I am honored to be a part of it all these years later.
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!
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.
My daughter Abby has tuberous sclerosis complex. Like most parents I felt overwhelmed with her diagnosis. Upon referral to the TS Alliance I was embraced by a community full of hope. We share each other's struggles and triumphs. There is always someone who has experienced what you are going through. I've never had an issue that the Alliance didn't immediately respond to. They were advocates in our educational system for my daughter and the funding they have procured for research has lead to the development of treatments that have directly benefitted my daughter. I am thankful for them every day.
The TS Alliance has been the BIGGEST resource since our son was diagnosed with Tuberous Sclerosis 4 years ago. The staff is always willing to help, advocate for us, and they're always transparent in all that they do. I'm thankful for the opportunity to volunteer for the Alliance as well, as advocating for my son makes me feel as if I'm doing something to help him fight for a cure!
The TS Alliance is an amazing organization with the biggest heart & turkey there to help no matter how big or how small the request may be. Our daughter Andi passed away in 2014 from TSC & even though we are not part of the day to day with TSC, the alliance still reaches out and lets us know how they’re doing and what upcoming things they’re working on to find a cure. My husband and myself both chair the Atlanta Region walk and have for the last 3 years & have plans to continue to do so to raise awareness so no other parents need to experience and make the decisions we had to make. We do everything in our power to keep ANDI’S memory alive & the TS alliance allows us to do that.
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!
I would have given the TS Alliance 6+ stars if I could have! My grandson was diagnosed as a baby and is a high functioning 17 year old today. The connection to the TS Alliance and the community has been encouraging and helped him becoming a confident young man. The TS Alliance is a favorite nonprofit of our extended family and we are grateful for my grandson's association with such a valuable 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!
We have been serviced by the National Tuberous Sclerosis Association Inc (aka Tuberous Sclerosis Alliance) since our son was diagnosed with TSC at just two weeks of age. He is now 12 and if it was not for the Alliance's involvement in research and recommendations on how to approach the multitude of manifestations this disorder brings, we would not be where we are today. We are eternally grateful for their invaluable service to our family and the TSC community!
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 Tuberous Sclerosis Alliance (TS Alliance) is truly sorry to hear you are unhappy with your child’s healthcare provider(s); however, please know our organization does not employ any physicians or any other healthcare providers. In addition, the TS Alliance does not accredit any TSC Clinic or TSC Center of Excellence, and the TS Alliance does not directly provide or guide any clinical care or medical decision-making. Anyone can read our full statement about TSC Clinics on our website at www.tsalliance.org/individuals-families/tsc-clinics/. We encourage you to reach out to your healthcare providers directly or to Jo Anne Nakagawa at [email protected], who can help direct your concerns.
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 is an outstanding organization that is giving our community so much hope as we can see a cure on the horizon. They are making remarkable strides in research! We are forever grateful for the support they have given our TSC family and community. The local and world conferences are amazing, the annual walks are inspiring, the opportunities for federal and local advocacy are available annually and continue to be successful, and the fundraising events are fantastic!! Truly a wonderful organization!!
We were connected with the TS Alliance shortly after our daughter was diagnosed with TSC1 in 2014. This is amazing organization and we were so grateful to get connected with them! They have helped us connect with other TSC families nationwide & top TSC clinics. We are advocates & volunteers with this organization. They listen to our feedback and always provide assistance when we reach out to them. Each year we travel to Washington, DC to lobby for federal funding with their guidance & help for the TSCRP. We feel like we are a part of a family & can make a difference to find a cure. Thank you TS Alliance for everything you do for our daughter, our family and our TS community!!
I have seen this organization grow and thrive for 45 years as one of its founders and a parent of a now deceased child with tsc.. It is phenomenal and amazing to me that it has endured and has helped fund research and provide support to thousands of families ..internationally .Tnis organization is doing work that affects even more ..as those with autism and epilepsy also which are dual diagnosis of TSC in many cases . The leadership is excellent and the families who work to raise funds and awareness are the core that ensures it’s progress for all time .. I am passionate about this organization and know one day there will be a cure for TSC because of it .
It is educating millions about this disease and changing lives for the better every day
I am a mother of a child with tuberous sclerosis who live to age 31' suffering from seizures, brain and kidney tumors, severe cognitive delay, behavior and sleep disorders and autism. Raising her was a struggle and finding medical and eduvational and social services a constant battle. This disease affects a whole family and community. I am a co founder of this orhanization , begun in the 70's to provide support, awareness and research to treat, and perhaps cure this disease. Today this organization reaches thousands daily all over the world, research has provided new genetic testing and drug treatments to prevent seizures and slow tumor growths. There are tsc clinics in several medical cienters in the usa helping families. Today tuberous wclerosis is not hopeless ! This organization provides a lifeline of hope for families struggling to help their child live with this disease which can present with one or 100 symptoms in a person. The research wevdo helps find ansers for aitism, epilepsy and other brain diseases. Other countries have chapters and reach out for help also.
It is a viable successful non profit which provides daily answers and advocacy for coping and treating .... And hopefully one day Curing!
The TS Alliance is a lifesaver for the TS community. When my daughter was diagnosed at just 1 day old, we had never even heard of Tuberous Sclerosis. This resource became a lifeline and huge wealth of knowledge and support. Thank you for all you do!
The TS Alliance has been so incredibly helpful in helping our family navigate through this complex disease! The resources and contact info they provide us outstanding and had literally made a huge different in both my husbands continuous medical care and our sons journey into the school system! We are proud to stand behind and support the TS Alliance!
Incredible research happening. That also make such an effort to be present and helpful in all of our smaller state communities.
The TS Alliance has been there for our family since day 1 of our daughters diagnosis. Each year they up there support with amazing resources and community care. We are so thankful for the TS Alliance and all they do for families like ours.
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!
The TS Alliance and their incredible staff are angels. If you need help understanding the disease, working through school or doctor visits, helping navigate through the world of a TSC, they have information and assistance. Help for school teachers, physicians, parents, siblings, grandparents, the individual diagnosed with TSC - it is available through this incredibly dedicated Nonprofit. The TS Alliance is a grassroots, groundbreaking finely tuned organization that will give everything but up
The TS Alliance is wonderful!!! I have been involved with this organization for over 6 years, since my daughter was diagnosed. Without the help, support, education, understanding, and friendship provided by the TS Alliance, I honestly would have been lost. The Alliance supports families and friends, as well as provides information to any person associated with Tuberous Sclerosis - from educators to doctors. As my daughter grows and continues to face more challenges, I have continued to need guidance, education, and support. The TS Alliance has always been there to help.
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!
Finding out that my son had Tuberous Sclerosis Complex was one of the most difficult and heart wrenching days of my life. The Tuberous Sclerosis Alliance became an educational resource for me to gain knowledge about the NOW UNCURABLE condition. It also gave me the realization that no two stories are the same and my son DIDN'T have a death sentence over his life. The TSC Alliance also gave me a information on where to network and gain the support from other moms also fighting this battle with and for their children. I'm internally grateful for all that the Tuberous Sclerosis Alliance has done for families and people like my son whom fight this condition everyday of their lives.
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.
Caring, loving, amazing support and awareness.
We are family
We are TSC
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!
I am beyond grateful for all the National Tuberous sclerosis Association has done for me and my daughter. I really couldn’t have gotten this far without their guidance and support. The enormous knowledge I’ve gained over the past few years of being connected to the TSA has made me a better advocate for my daughter. :)
TS Alliance is an incredible organizationt! Not only do they provide help and guidance to families as they suggest appropriate resources, but they have helped me feel like I can help our grandson who has TSC. While I can not control any health related issues, it has given me a place where I can feel I am making a difference , that ultimately will help D, as well as other patients and. families facing this challenging disease. Through TS Alliance, we are able to provide educational programs, fundraising events, and social gatherings, where families are able to feel less isolated and gain support of others. While I sincerely wish D. was never diagnosed with TSC, I cannot thank TS Alliance enough for all they do, nor could not imagine a better organization With which to affiliate.
The TS Alliance has alliance has been there from the beginning, supporting us, connecting us and informing us about our sons diagnosis. I’m so thankful that such an inspiring group of people are fighting on our behalf to find a cure. We will be forever grateful for all their hard work and commitment to this community.
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!
The TS Alliance has been there for my family since my son was diagnosed with TSC. We are eternally grateful for all that they do to support our family along with so many others. Progress is being made through research and my son has benefited from this. There is still more to do and I'm glad the TS Alliance is leading the way!
In 2009 my daughter was diagnosed with Tuberous Sclerosis Complex. We have no family history and had never heard of the disorder. Thankfully we found the Tuberous Sclerosis Alliance and they helped us navigate through the diagnosis and beyond. We’ve been involved in the TS Alliance ever since then and quite frankly don’t know what we would do without them. The work they do on behalf of all TSC families and the progress they’ve made towards a cure and improving the lives of those affected is astounding. I’m honored to be a new member of the Board and thankful for the important work they do every day for TSC families.
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.
We would be so lost if it weren't for the Tuberous Sclerosis Alliance. The organization does an excellent job educating people affected with the disease and raising awareness with the general public. They have the most accurate information about the disease on their website, and most importantly, money raised through the organization has resulted in a medication that has drastically improved my little girl's life. Notice the improvement in her kidneys since being on Afinitor. The white blobs are cysts.
My daughter, Chloe, was diagnosed with tuberous sclerosis just before her 4th birthday, when she started having seizures. The doctors told us right away to visit the TS Alliance's website and said that is where we will find the most accurate information on the disease. If it weren't for the TS Alliance, I don't know where we would be today. If it weren't for all the money they raise that goes toward research, Chloe would probably be in a lot worse shape today, and I'm sure her life has been extended thanks to their hard work. We are thrilled to be able to raise as much money as we can for the alliance because we know it will benefit Chloe and others who have TS.
The Tuberous Sclerosis Alliance had provided us with invaluable support over the years. Both our children fight TSC. We are so thankful for the resources provide by the TS alliance and by their dedication to lifesaving research. We have benefited immensely. Thank you TS Alliance.
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.
The TS Alliance must be the first stop and is the best place for those individuals and families living lives impacted by Tuberous Sclerosis Complex. Through its direct efforts, it is only one of a handful of rare diseases with a FDA approved medication for a manifestation of the genetic disorder. In our case two meds and hopefully more on the way. My life is different and better because I got involved with the TS Alliance
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.
We first found the ts alliance almost 14 years ago when my daughter was diagnosed with Tuberous Sclerosis Complex. Since then we have had two more children diagnosed with TSC as well as my husband. To have a non-profit committed to awareness, support, research and ultimately finding a cure is incredible. Over the years the TS Alliance has guided us through this journey and also given us the opportunity to give back and help other adults and families affected by TSC. Rob is 39, Rylee is 15, Jake is 12 and Luke is 9. Each battles TSC daily with different manifestations and different levels of severity. The TS Alliance gives us hope that one day TSC will not dictate every decision my children make. I have no words for how extremely grateful I am for TS Alliance and all they do for those of us living with TSC.
My husband and 3 children all have TSC. When my daughter was first diagnosed over 12 years ago we had never heard of Tuberous Sclerosis Complex. We were scared and felt very alone, until we connected with the TS Aliance. Over the years the TS Alliance has been a constant support. They have educated us, encouraged us and helped us connect with others traveling a similar path. I am truly grateful for the TS Alliance and all it does for those of us living with TSC. Because of the amazing strides and support I have hope my kids will have a brighter future!
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!
Our daughter was diagnosed after infantile spasms at 9 months. We were overwhelmed with the possible effects of her disease, but the NTSA (Now TS Alliance) was a lifeline of information, research, referrals, & hope. Because of their research, a drug was found to stabilize our daughter, who had had 12 surgeries in 5 years, on her kidneys, lungs, & uterus. Her life expectancy has been stretched beyond the 35 years she was given, and she has not needed surgery for several years. We feel we owe the TS Alliance her life. She has served as a board member, and was given a Volunteer of the Year Award for her work . I have distributed in SD information folders prepared by the Alliance for dermatologists, neurologists, pediatricians, & elementary & middle school teachers, and contacted families in SD who requested a contact. This is a well-run organization staffed by caring, intelligent, energetic people. Their lobbing efforts in Congress have kept research dollars coming, & my daughter & I also lobbied.
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!
When my 14-year-old son was diagnosed at 2 months of age I had never heard of tuberous sclerosis complex. My husband and I were shocked and scared. We didn't know what to expect. We were very fortunate that our son's geneticist had recently been to a conference where he learned about TSC and referred us to the NTSA, now the TS Alliance. I have met some of the greatest people I have the honor of calling friends who not only shared their stories with me but also helped me get through those tough times of seizures with my son. The TS Alliance does more than just raise awareness and funding for research - they also connect adults and families of children with others so that we don't have to go through it alone. These people are genuine in their caring for the community and in their commitment to finding a cure!
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.
TS Alliance has helped in so many ways. They have helped increase my knowledge and also helped with finding resources. My daughter is affected by TSC2 in many ways (cortical tubers, subependymal nodules, SEGAS, cardiac rhabdomyomas, skin lesions, eye lesions, developmental delay, seizures, etc). She has had brain surgery to help with the seizures. Along the way, I have used TSA as a resource without having to question whether the information provided was legit. It has helped me to provide the best care possible. As a nurse and soon to be FNP, I recognize the importance of prevention. The TS Alliance has helped me prevent situations and allow others to prevent a bad scenario all by increasing our knowledge and resources. This is key to helping our healthcare system improve.
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!