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!
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!
The TS Alliance has been very helpful to my family in dealing with my son's diagnosis of tuberous sclerosis. Probably the thing that they have done that has helped us the most is sponsored a webinar on dietary treatments for seizures a couple of years ago, presented by a leading neurologist. That presentation led to us putting him on the ketogenic diet, and he has been off seizure meds and seizure free for 8 months! They also sponsor studies to research new treatments and have brought my family close to others with this disease. Because of the TS Alliance I never feel like we are alone in our struggles. It's a wonderful organization.
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.
My granddaughter was diagnosed 2 days before her birth 23 years ago. Since then our family has experienced many manifestations of this horrible disorder. The organization has helped us with education, and referrals, and mostly with personal and emotional support to deal with everyday life, that has changed for all of us dramatically. There are as many variations as there are people affected, and for each group the organization has managed to provide peer support as well, as medical resources. Each day we are informed of new treatments and possibilities to help us deal with tuberous sclerosis.
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.
My son was born in March of 2012 and diagnosed hours after birth. We had never heard of TSC, yet our son was facing brain surgery. The first person I spoke with was the chair of the local alliance. I've since become the chair and gone to DC with the alliance to seek funding. I'm so thankful there is a group seeking to better the lives of those with TSC and that gives me a chance to be involved. I have so much more hope for my son's future. -Becky Gaunt
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!
When my third grandson was born in July of 2011 with tumors in his heart, left eye and brain our family was not prepared for the diagnosis of Tuberous Sclerosis. Thanks to the TS Alliance we received excellent guidance and all our questions were answered. My sweet grandson was having trouble with the anti seizure drugs that were prescribed for him at birth. it seems that certain medications that prevent seizures in patients can do more harm than good for these children. TS Alliance was knowledgeable and guided us with the proper combination medications. Don't know where we would be without the help of TSC? Thank you National Tuberous Sclerosis Association for helping our children and their loved ones cope with this condition. Praying for a cure every day! Sincerely, Stephanie Langbein (grandmother to John Fitzmaurice)
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.
The TS Alliance has been an unbelievable resource to my family and others affected by TS. Kari and her team are a passionate group of people who are dedicated to finding a cure while improving the lives of those affected. I am proud and honored to join the cause as a Board member of the TS Alliance come January.
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'm a volunteer, but also a client served. The Tuberous Sclerosis Alliance has been a wonderful resource for my family, particularly since we had never even heard of this condition until my son was diagnosed earlier this year. We were devastated, knowing only what we found via "google" when the diagnosis was first conveyed. Once we were connected with the TS Alliance, however, we felt like we understood better the implications for our son, and were better able to cope. In fact, I felt so good about the organization, I immediately volunteered as the education liaison in Massachusetts, and hope to participate in the Alliance's legislative advocacy efforts. In sum, the education resources and advocacy efforts of the Alliance truly make a difference for families affected by TS.
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!!
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.
Our 3 year old daughter was diagnosed 2 years ago with TS. The Tuberous Sclerosis Alliance has been a huge support in helping us find resources to deal with daily challenges. They are also instrumental in facilitaing research towards a cure, rasing funds, and increasing awareness. It's very reassuring to myself and family knowing there's a great organization out their like the TS Alliance.
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!
The Tuberous Sclerosis Alliance has helped educate my family an myself about the disease and has been a life line for many years. I have been a volunteer for 10 years and will continue as long as this disease touches my life. They are truly dedicated in help improve the lives of those affected with Tuberous Sclerosis Complex. They have created many support opportunities for families across the USA and beyond. They offer conferences, information regarding your childs education and how to deal with the schools systems. They continue to reach above and beyond to help find a cure for TSC. I do not know what I or my family would have done if this organization didn't exist!!
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.