National Tuberous Sclerosis Association Inc

Rating: 4.91 stars   100 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.
2014 Top-Rated Nonprofit
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More Info

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

Rating: 4 stars  

In the early 1990s our son was diagnosed with Tuberous Sclerosis and we felt the fear and devistation of this news. Mainly there was no one who could explain with any reasonable authority what this meant, what to do or not do. It was then we first reached out to a TSC clinic. It was there we found compassion, and understanding. Not only did they make their time available on a Saturday, but all the doctors, nurses, and volunteers were so very helpful and approachable.

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Rating: 5 stars  

TS Alliance has been a wealth of resources and knowledge to me since my son was diagnosed at the age of 2. For the past 7 years, TS Alliance has educated school staff and has aided in his IEP development. As well as educating family members, caregivers, and his family physician. I am so grateful for the resources from TS Alliance, without them I wouldn't be as effective of an advocate for my son.

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Rating: 5 stars  

Our son was diagnosed with Tuberous Sclerosis Complex in 2007. We were informed, supported and welcomed to the community by the then Tuberous Sclerosis Alliance...wonderful staff, detailed, up to date information, print outs for doctors, parents, teachers and therapists. They are a full service operation that never gives up on supporting families, looking for a cure and informing the public about this awful disorder.

If I had to make changes to this organization, I would...

move them to my local city so I could visit and meet them.

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

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Rating: 4 stars  

My son was diagnosed with TS in 2003. The TS Alliance was key to provide us resources in order to learn more about our disorder. They have top notch physicians and researchers who are continually identifying new therapies for our children. Recently, our son was diagnosed with hydrocephalus and the local hospital wanted to do immediate surgery. With the assistance of the physicians associated with the TS Alliance, we were able to begin medication which has eleviated the fluid on his brain without surgery. All of this was due to such a top notch group of people and the financial support that is attributed to the TS Alliance. In addition, we appreciate the family support in our local market. Keep up the good work!

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

A lot

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

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2013

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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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Rating: 5 stars  

I would be floundering in an ocean of ignorance about my disease if it wasn't for TSA. Tuberous Sclerosis Alliance led me to the best doctors I needed to treat my various conditions due to this disruptive disease. They directed me to the Inspire website where I have found comfort and knowledge from others who have it. TSA has provided conference calls so adults can learn more about TSC. If it wasn't for TSA I would have no understanding of what I had been dealt with. I am so grateful to TSA.

If I had to make changes to this organization, I would...

Make it easier to donate money by setting up auto withdrawals

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  

I have had the honor to become involved as a volunteer for my local chapter and to attend the annual March on Capitol Hill for funding. The Alliance gives us so much hope for the future of our children. It is a great resource for information and assistance.

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1 previous review
Rating: 5 stars  

My son was born in March of 2012 and diagnosed hours after birth. We had never heard of TSC, yet our son was facing brain surgery. The first person I spoke with was the chair of the local alliance. I've since become the chair and gone to DC with the alliance to seek funding. I'm so thankful there is a group seeking to better the lives of those with TSC and that gives me a chance to be involved. I have so much more hope for my son's future. -Becky Gaunt

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? 
Rating: 5 stars  

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.

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

Was this review helpful? 
Rating: 5 stars  

I am so grateful for this organization. They have given us support and information as well as a kind friend to help navigate through this disorder. We would not be where we are today and have achieved our successes if it were not of the support of the TS Association! Thank you!

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1 previous review
Rating: 4 stars  

I learned about the TS Alliance 6 years ago when my son was diagnosed with TS. The Alliance has been a wonderful support for our family with many resources needed through the stages of TS. I am so grateful to have the Alliance!

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? 
Rating: 5 stars  

What a wonderful organization! TS Alliance provides endless support for all those seeking it. My nephew has TSC and this organization has been an amazing source! Thank you!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful?