This organization is amazing! Not only is it deeply focused on raising funds for research, which is closest to my heart, it has joined together a strong community that supports one another. The staff at the TSC Alliance is dedicated to moving the ball forward to help find a cure for TSC, and short of that, to help fund clinical trials into medical advances for treatment. My experience with the TSC Alliance has been nothing short of incredible, and this organization has made our family's journey with TSC easier to navigate.
Hard to believe that I first learned of the TSC Alliance almost 8 years ago when my baby was diagnosed in utero during a routine ultrasound, the day after her due date. Lots of things go through your mind at that moment, as well as the days and weeks that followed. I was extremely fortunate to have found the TSC Alliance shortly after our diagnosis. They are a wonderful resource, not only for information about TSC, but with assistance making connections with physicians, applying for studies & clinical trials and simply having a conversation with someone that has already traveled down this path. I honestly do not know what I would have done without their guidance and resources as I navigated this new terrain. They are simply amazing.
I have been involved in TSC Alliance since 2012. The organization is filled with amazing staff members and volunteers, all eager to help. Their mission is genuine and they are so supportive above and beyond what one might expecr. While no one wants to have a challenging disease in the family,I am proud to be connected to TSC Alliance.
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.
My experience with this nonprofit organization has been very rewarding. The leadership of the the group is "top notch" and really cares about the individuals in the community affected with this rare disease. In my role as an Ambassador for National Tuberous Sclerosis, we share the latest information, research, and opportunities that are available to individuals and families of those dealing with their daily challenges. The medical professionals associated with the group have extensive knowledge and ability to diagnose and make recommendations for individual needs. My involvement includes fundraising, world conference attendance, and advocacy on the state and federal level. We look forward to continued support of the mission "Hope No Matter How Complex"!
The TSC Alliance has made a huge impact on my family. It has provided an avenue of support and hope while we deal with navigating the complexities of tuberous sclerosis complex. From medical research opportunities to educational aide to a shoulder to cry on, there has never been an issue that they didn't help me address.
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 Tuberous Sclerosis Complex Alliance has been our family’s lifeline now for over 20 years. In ever new season of living life with TSC, the Alliance has met our needs when we have come looking for support or resources or clinical help or any of a number of issues! The leadership grows stronger every year and what was once a small grassroots group of families has become a force to be reckoned with in the nonprofit world.
My story started a little over 18 yrs ago. I was told that my unborn baby probably had "Tuberous Sclerosis". What was that? We were scared, had never heard of that before, we were so lost. As soon as he was born a couple of days later, we met Dr. Northrup, as to I delivered out of the hospital she worked at. I didn't know that before I was sent there to deliver. Being the ever so knowledgeable on TS, she made the diagnosis, ran all the test and answered all the questions. I immediately, googled Tuberous Sclerosis and how to get connected with anybody. The website came up, I got in contact, met some local families, which I have been friends with for 18 yrs! I chaired our local chapter for many yrs, went to March on Capital Hill, and attended a couple conferences. They are amazing in everything they do! Such an amazing organization and the many ways they help those affected and their families. I honestly don't know what I would have done without them!
Over 50 years ago I was a young mom struggling to find hope for my baby with Tuberous sclerosis complex . There was no info or awareness then . So Together with three other moms , I found , we started this organization to fund research , spread awareness and provide hope and support .. today we have many TSC clinics , better treatments and are providing support and hope to thousands of families world wide living with the complex medical needs of this neurological disorder .
The fact that it is still in existence , educating the medical profession about TSC , and funding cutting edge research, Shows how important and effective it is .! The , now , tscalliance.org is providing life altering resources daily with love and professionalism !
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
We've been associated with this organization since our son was diagnosed with this rare disease 32 years ago; they were one of the very few resources out there and everything available was in print! Over the years we've watched the organization grow, improve, develop new helpful materials and resources, and stay very connected with its membership.
The TS alliance has been a lifesaver for our family. They were there for us upon our initial diagnosis and have stood by us throughout our journey. They are an upstanding organization that we are proud to share with our friends and family.
The 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 has been a safe place for my family since my daughter was diagnosed with TSC last year. The resources they provide are helpful and their staff is so supportive! We are grateful we found them to help us navigate every step of the way.
The TSC Alliance helped me when I was diagnosed not only learn more about Tuberous Sclerosis Complex, but help me connect with support services & meet people who understood where I was coming from. This connection with others, in turn fostered my desire to help others with TSC connect.
Everyone I’ve met involved with the Alliance is giving of their time & is very welcoming.
I truly enjoy volunteering with the Alliance. We are all unique, but the same thing brings together no matter where We are.
The TS Alliance has been an amazing support system for my family. Not only are the deeply connected to the families they serve but they also are always constantly looking for new ways to gain more therapies for families to use with research.
Incredible research happening. That also make such an effort to be present and helpful in all of our smaller state communities.
Tiberius Sclerous Alliance has been so helpful to my family. When my granddaughter was first diagnosed we had no idea where to turn. The Alliance was there to help us understand TS, what it would mean to my granddaughter and our fami,y. They have been there every step of our journey from medical information to educational information. I now volunteer as an Education Parent Mentor for the TSC Alliance to give back some of the support that we have been given.
I am so grateful to the TSC Alliance for their support of medical research and updates, webinars on all areas of concern to parents and professionals and their support of families. I honestly don’t know how we would have made this journey without the Alliance
The TSC Alliance is awesome. It is an extensive network of people with lived experiences with TSC. There is support in every state and people who can help, support and connect individuals and families with the challenges they face in their journey. What is great the Staff is there to connect people with other families and or experts in TSC. That ability to help people connect especially in Healthcare, it can be challenging. This organization truly supports the families and individuals with TSC and they help get results.
My daughter Andi was diagnosed with TSC in 2014 and passed away at 11 weeks old from TSC. Since her passing my family and I have volunteered with TSC to continue to raise awareness and continued funding to one day find a cure. The TSC Alliance has welcomes my family since day 1 and continues to work together in one common goal which is to find a cure. We will continue to volunteer with them as long as we possibly can to ensure no other families have to experience what we have. We love the TSC Alliance!
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.
I have been involved with this non-profit since my daughter Rosemary was diagnosed at 10 months old. The TSC Alliance has helped support us in so many different ways I honestly don't know where we would be without them. I have been able to feel secure in handling my daughters health because of the work that the TSC Alliance does for those with TSC and their families.
Always full of resources, community connection and driving the reasearch forward not only domestically but internationally. I am so proud to be part of such an amazing organization!
I continue to be impressed with the way the TSC Alliance brought great information to all of us with webinars and events during the pandemic. We can't be together but they made it feel like were weren't so far apart! I am also encouraged with the progress in research and know that they are making a difference for my grandson and generations to come. Keep up all the great work!
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!
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.
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!
We found the TS Alliance soon after our sons diagnosis in 1997. Our involvement with the alliance has changed our sons life as well as our family. We are forever grateful for the help they gave us and so impressed with where the organization is today. I was on the board for 7 years to try to give back. And recently have joined the Endowment board. Lets keep it going as we work towards a cure while improving the lives of those affected.
I have followed the incredible growth and successes of this organization for many years. Two years ago I was asked to join the foundation board and since have continued to be impressed with breadth and depth of the organization. The passion and commitment of the leadership, staff, and hundreds of volunteers is evident in everything the organization does. TS is a very difficult and challenging disease and impacts each individual differently. There are no easy solutions ... yet . I have served on the boards of many non profit organizations and TSA is by far the best in my experience.
The TS Alliance is AWESOME! They have offered so much support and guidance through our son's two brain surgeries and multiple therapy changes. The seizures haven't gone away - nor has the TS Alliance! They have been with us through thick and thin and we have made incredible connections with other families through this amazing organization!
The TS Alliance has been an invaluable resource for my family. We have a son that was diagnosed with TSC as an infant. This was terrifying and we felt very lost. Thankfully, we were guided to the TS Alliance, which has been an amazing resource for the most up-to-date scientific/medical information regarding TSC and an enormous help with navigating the school system to get our son the support he needs. In addition, the Alliance coordinates an amazing government advocacy program, which has resulted in millions of dollars in government research funding. The Alliance has also itself raised enormous funds for scientific research, already making a huge impact on the trajectory of the disease, and is committed to doing so much more. The staff there is always doing what it can to help families impacted by TSC, and we are hugely grateful!
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@example.com, 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!!
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!
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. :)
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