National Tuberous Sclerosis Association Inc

Rating: 4.92 stars   116 reviews

Issues: Health, Cancer

Location: 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.
2015 Top-Rated Nonprofit
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More Info

EIN 95-3018799
(800) 225-6872
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Community Reviews

Rating: 5 stars  

2 people found this review helpful

We're from Israel and thanks to Tuberous Sclerosis Alliance helped we found specialist at USA that has helped us virtually. We learned a lot about the rare disease from the comments from others on the FB and TSA page, they are doing an amazing job. From them we've learned about Affinitor even before it was approved at 2014 in Israel and about Rapamycine that is not in a use here for AML in TSC and thanks to it(!!!!!) she is on Rapamune now since got refuse for Affinitor. She's a firstpatient in Israel who's using Rapamune for AML.
Thank you TSA Alliance , you are the best!

 
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Rating: 5 stars  

2 people found this review helpful

My brother is 62. The Tuberous Sclerosis Alliance helped me find a specialist for him outside the State of New Mexico (were there are none). I learned a lot about the rare disease from the comments from others on the TSA Facebook page. Michael is now off the meds he had been on for most of his life and on medications that are much, much better. After years of being told that nothing more could be done for him, I found there was. More treatments have been discovered in the past 10-15 years thanks to the efforts of this nonprofit!

 
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Rating: 5 stars  

1 person found this review helpful

There are few organizations like the TS Alliance. Ethical. Focused. Educational. Caring. As a Mother raising a child with TSC, the resources available through this amazing group are countless and appreciated more than they will ever know. Thank you TS Alliance.

 
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Rating: 5 stars  

1 person found this review helpful

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  

1 person found this review helpful

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

 
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Rating: 5 stars  

2 people found this review helpful

The TS Alliance is a wonderful organization and has been very helpful for our family. My son has tuberous sclerosis, and we have found excellent treatment options thanks to information provided by the TS Alliance. They do great work!

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

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

 
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1 previous review
Rating: 5 stars  

3 people 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

 
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Rating: 5 stars  

My granddaughter was diagnosed at birth, and at the time I never heard of tuberous sclerosis...
our family had to learn quickly and well about this disease, and how difficult it is to deal with ...
the National organization was very helpful with websites, and support to connect with other families and creating and international community via the web.
Emily is now nearly 25 years old, and even tho she still has seizures and other symptoms, we are a very different family in cohesiveness, empathy and understanding towards all people with special needs.
we now have annual fundraisers locally and internationally and I don't think we could've learned and done as much as we did without this wonderful organization... I feel grateful each day for their existence.

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?

Life-changing

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?

2014

 
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1 previous review
Rating: 5 stars  

My granddaughter was diagnosed 2 days before her birth 23 years ago. Since then our family has experienced many manifestations of this horrible disorder. The organization has helped us with education, and referrals, and mostly with personal and emotional support to deal with everyday life, that has changed for all of us dramatically. There are as many variations as there are people affected, and for each group the organization has managed to provide peer support as well, as medical resources. Each day we are informed of new treatments and possibilities to help us deal with tuberous sclerosis.

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?

2012

 
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Rating: 5 stars  

Our little grandson was diagnosed with TSC shortly after birth. At that point I was impressed with the Tuberous Sclerosis Alliance and found them to be very helpful. Since then, I have had the honor of being able to volunteer (in several capacities) for the organization. I am so impressed with the staff, some of the most dedicated and passionate people, I have ever met. Not only do they help families in a variety of ways, finding physicians, helping navigate the schools systems, lending support, etc, the entire organization is driven to find a cure for TSÇ. When it comes to the goal of finding a cure, these people are unstoppable!

 
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Rating: 5 stars  

The TS Alliance is a great organization! I am the parent of a 35-year-old son with TSC and have been involved with this organization for 33 years. For the past few years, I have been a volunteer in the National Office and have witnessed the expertise of the staff, as well as their integrity in helping support the members of the TSC community. They give support to newly diagnosed individuals, as well as others who are going through the various stages of the disease. They encourage community involvement by having many types of activities and different fundraising events to help raise awareness and funds for research.

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?

2014

 
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1 previous review
Rating: 5 stars  

TSAlliance has been a great organization! I've actually been involved as a parent since 1979 when it was the National Tuberous Sclerosis Association and have benefitted from the support of the group in my various hometowns in California, Colorado and Virginia. They are a great group of hardworking staff, as well as a huge group of volunteers, who are committed to finding a cure for TSC. They are very involved with the social media network and reaching out to the community in every way they can, as well as trying all different ways to raise awareness about the disease and fundraise for research.

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?

Some

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

 
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