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National Tuberous Sclerosis Association Inc

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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

152 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

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!

Karen244

Volunteer

Rating: 5

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

Previous Stories

Volunteer

Rating: 5

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.

Rebecca Kaufman R.

Volunteer

Rating: 5

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.

Alyssa H.1

Volunteer

Rating: 5

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.

Teresa Hummingbird S.

Volunteer

Rating: 5

The TS Alliance was a huge blessing and resource when my granddaughter was 1st diagnosed and have continued to be!

Lisa T.2

General Member of the Public

Rating: 5

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!

LaToya R.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Lau M.

Client Served

Rating: 5

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.

Previous Stories
1

Client Served

Rating: 5

Caring, loving, amazing support and awareness.
We are family
We are TSC

Read more
Christopher L.1

Client Served

Rating: 5

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!

Mona E.1

Client Served

Rating: 5

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. :)

Volunteer

Rating: 5

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.

Alanna S.1

Volunteer

Rating: 5

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.

Heddy21

Client Served

Rating: 5

The TS Alliance has been there for our family since day 1 of our daughters diagnosis. Each year they up there support with amazing resources and community care. We are so thankful for the TS Alliance and all they do for families like ours.

Nagy K.

General Member of the Public

Rating: 5

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!

Client Served

Rating: 5

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!

1 Julie295

Board Member

Rating: 5

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.

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.