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  

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

 
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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

 
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Rating: 5 stars  

My son was diagnosed with TSC in 1995. I had been a Pediatric RN for 10 years. I had never heard of TSC. Our doctor only had 1 page of information. He gave us the number for NTSA, and the information we received was so wonderful! It so great having an organization like NTSA that helps parents understand what's to come for our children with TSC!

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

none

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: 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  

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: 4 stars  

I had never heard of Tuberous Sclerosis before my son's diagnosis. I was at a complete loss about what it meant for him. Our neurologist put me in touch with the Tuberous Sclerosis Alliance and I was so impressed upon first reaching out to them that I immediately offered to volunteer in whatever capacity I could. It has provided me a wealth of information and connected me with a community that provides enormous support to those living with TSC. I can't express just how much this organization means to all of the families it helps.

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?

2013

 
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1 previous review
Rating: 5 stars  

I'm a volunteer, but also a client served. The Tuberous Sclerosis Alliance has been a wonderful resource for my family, particularly since we had never even heard of this condition until my son was diagnosed earlier this year. We were devastated, knowing only what we found via "google" when the diagnosis was first conveyed. Once we were connected with the TS Alliance, however, we felt like we understood better the implications for our son, and were better able to cope. In fact, I felt so good about the organization, I immediately volunteered as the education liaison in Massachusetts, and hope to participate in the Alliance's legislative advocacy efforts. In sum, the education resources and advocacy efforts of the Alliance truly make a difference for families affected by TS.

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

 
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Rating: 5 stars  

I hadn't ever heard of tuberous sclerosis when our son was diagnosed at 3 weeks of age. I remember being in shock upon receiving this diagnosis. I visited the Tuberous Sclerosis Alliance website almost immediately and had no idea what our future would hold. I remember reading through resources for the newly diagnosed and printing off a notebook that would help me organize all my son's medical care. I still use the notebook today, four years later. The TS Alliance has continued to provide invaluable resources as we navigate our lives with TSC.

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?

2013

 
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