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Nonprofit Overview

Causes: Health

Mission:

Tuberous Sclerosis 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

136 Stories from Volunteers, Donors & Supporters

1

Volunteer

Rating: 5

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!!

1 Karren N.

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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.

1 Matthew79

Volunteer

Rating: 5

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.

Client Served

Rating: 4

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.

3 Amy_54

Volunteer

Rating: 5

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.

Previous Stories
1

Client Served

Rating: 5

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.

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1

General Member of the Public

Rating: 5

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.

keithah

Donor

Rating: 5

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.

Previous Stories
4

Board Member

Rating: 5

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

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General Member of the Public

Rating: 5

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.

2 Shannon66

Volunteer

Rating: 5

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.

Previous Stories
1

Volunteer

Rating: 5

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!

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