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National Tuberous Sclerosis Association Inc

Rating: 4.91 stars   104 reviews 4,198

Nonprofit Issues:

Health, Cancer

Address:

801 Roeder Rd Ste 750 Silver Spring MD 20910 USA

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.

2014 Top-Rated Nonprofit
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More Info

(800) 225-6872
www.tsalliance.org

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Reviews for National Tuberous Sclerosis Association Inc

Role: General Member of the Public
Rating: 5 stars  

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!

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Rating: 5 stars  

TS alliance is an amazing wealth of knowledge and support!!

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Rating: 5 stars  

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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1 previous review
Rating: 5 stars  

My husband and 3 children all have Tuberous Sclerosis Complex and I hate to think where we would be without the support, encouragement, research and hope of the TS Alliance. I will never forget just over 11 years ago when I first heard the words Tuberous Sclerosis Complex. My husband and I were young parents with this beautiful 18 month little girl and the walls came crashing in around us. My mom was the first person to contact the TS Alliance and begin to gather information and introduce us to others that were on a similar journal. Since that original diagnosis we have heard it three more times. When my son Jake was born, he started having seizures at 11 months old that led to the diagnosis, when my husband and I did genetic testing and it turned out my husband had TSC and before our son Luke was even born and tubers were discovered on his heart and an amnio led to an early diagnosis. I have no real words to explain the journey we have been on (my daughter is now 13, Jake is 10, Luke is 7 and my husband is 37). The TS Alliance has helped carry us through some dark days and celebrated with us on the good days. They have walked us through the diagnosis, treatment options, numerous hospital stays, additional diagnosis of ADHD and Autism, issues with behavior and school and the need to know that others understand. The TS Alliance has helped bring together a community of people that have an ultimate goal of a cure for Tuberous Sclerosis. This community has been our constant support, encouragement and ultimately hope. We have no idea what the future holds and take each day as it comes. But I will say knowing the tremendous strides the TS Alliance is making in advocating research and educating society on TSC, I have hope that my kids will one day have a cure and TSC will not rule each move and decision they make.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

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!

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Rating: 5 stars  

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
1 previous review
Rating: 5 stars  

The Tuberous Sclerosis Alliance is very important to me because it represents people like my little girl who are affected by a deadly disease. The alliance works to raise awareness of tuberous sclerosis complex and raise money for a cure. It also directly helps the people living with the disease by advocating for them, educating them and helping them in any other way it can. If it were not for the TS Alliance, I would know nothing about the disease. I rely on their website for all my information. The alliance has made huge strides in recent years and will continue to do so if it gets enough support.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

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Rating: 5 stars  

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.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

The TS Alliance has been so amazing and helpful to my family and me. My son has tuberous sclerosis, and I can't even begin to explain how much it has helped our family to have trustworthy information about the disease and a place to go for support. I am thankful this organization exists-- they have done so much to improve treatment and diagnosis for people with this disease, people that otherwise wouldn't have much of a chance in life. Thanks to TS Alliance sponsored research studies, so much new information has come available. New and improved treatments have become the norm, treatments that have already helped my son have a better life.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Client Served
Rating: 5 stars  

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.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful?