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NATIONAL TUBEROUS SCLEROSIS

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Nonprofit Overview

Causes: Health

Mission:

The TSC Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected.

 

Geographic areas served: Nationwide

Programs: 1. Family Services develops programs and services that provide individuals with tuberous sclerosis crisis counseling and direct access to the information, resources and specialists experienced in the diagnosis, treatment, and management of tuberous sclerosis.2. Research stimulates and supports genetic, clinical and basic research into the various manifestations of tuberous sclerosis to further the development of genetic testing, gene therapy and clinical therapies.3. Public Health Education heightens awareness of tuberous sclerosis throughout the general public to broaden the scope of support and understanding beyond the tuberous sclerosis individuals and their families.4. Professional Education expands programs targeting those specialists who treat patients with tuberous sclerosis, medical students, genetic counselors and educators to minimize the tragic consequences of ignorance and misinformation.5. Government Relations focuses on obtaining federal resources for tuberous sclerosis research, clinical care and information dissemination.

Community Stories

201 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 4

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!

1 RosaLee M.

General Member of the Public

Rating: 5

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!

1 Maria51

Volunteer

Rating: 5

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!

General Member of the Public

Rating: 5

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.

Jyoti C.

Client Served

Rating: 5

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.

Amanda46

Client Served

Rating: 5

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!!

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

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.

Client Served

Rating: 5

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.

Lucy11

Client Served

Rating: 5

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.

Volunteer

Rating: 5

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.

Isaac A.

General Member of the Public

Rating: 5

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.

Deborah36

Volunteer

Rating: 5

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.

Faye M.

Volunteer

Rating: 5

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 :)

Jane40

Volunteer

Rating: 5

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.

Treasa B.

Volunteer

Rating: 5

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.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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!

Client Served

Rating: 5

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.

1

Board Member

Rating: 5

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.

General Member of the Public

Rating: 5

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

Janet Jayna H.

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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!

Volunteer

Rating: 1

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

Volunteer

Rating: 5

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!

Julia15

Volunteer

Rating: 5

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!

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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!

Marime S.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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!

Melena B.

Client Served

Rating: 5

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 !

Peter17

Board Member

Rating: 5

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.

Client Served

Rating: 5

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!

Volunteer

Rating: 5

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

Donor

Rating: 5

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.

12

Volunteer

Rating: 5

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.