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National Tuberous Sclerosis Association Inc

Rating: 4.92 stars   116 reviews 4,483

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.

2015 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

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

This non-profit has answered the calls of any scared parent (me) when we just need to talk to somebody while we deal our baby's seizures or watch them rock and stare blank out into nowhere. They help reassure us as we do what the doctors tell us to and offer to mail out and now email or fax information to us with further explanations, opportunities to learn and to ask questions. They listen to us sob. They invite us to incredible seminars where experts in the medical field and researchers all share the same dinner table with the families coping with TSC. These people assist us in fundraising for a cure. They direct us when advocating for our child's rights and ours within the schools, the community, and other temporary misunderstandings. The TS Alliance never lets us feel alone in coping with this disease and all that it entails. I was a young mother of just 21 when I first spoke to them- before the internet and before most Dr.'s spoke to me like an adult mother that knew her baby. The TS Alliance had an 800 number with people that have always treated me with respect, care, and empathy. They were incredible then and are today. More than once they have been like a lifeline to our family. Thank you.

 
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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  

2 people found this review helpful

When my son's diagnose came, we were scared and overwhelmed. They immediately offer us support, consultation, resources, and comfort. The entire staff are amazing, they treat you like family and don't let you down.
Having a child with TSC is a horrible and heartbreaking struggle, but at least we are no alone.
TS Alliance is committed to find a cure, they lead investigation. I can't thank enough for all the sweetness and support they bring to parents and caregivers.
I am TSC!

 
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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  

1 person found this review helpful

TS Alliance has been an incredible help as we care for our daughter with TSC.

 
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Rating: 5 stars  

3 people found this review helpful

The TS Alliance must be the first stop and is the best place for those individuals and families living lives impacted by Tuberous Sclerosis Complex. Through its direct efforts, it is only one of a handful of rare diseases with a FDA approved medication for a manifestation of the genetic disorder. In our case two meds and hopefully more on the way. My life is different and better because I got involved with the TS Alliance

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

As an adult with a mild case of TSC also serving on the board, I am truly amazed at how effective this dedicated group of staff and volunteers is in interacting with its community, researchers and politicians. That such a group has fostered relationships that have led to several FDA approved treatments to help those impacted is beyond remarkable. To think that I had never met another person with TSC until I was 30 and now some nearly 15 years later I can go to my doctor to get a presciption for my TSC indication is a possibility I never envisioned, not to mention to those countless parents who also have choices to improve the lives ot their children. I am so proud to be affiliated with this group also known as the Tuberous Sclerosis Alliance.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

This is the first resource I found after our granddaughter's diagnoses at age 3. It has allowed me the tools to share awareness with others, including pediatricians who missed every physical sign. We are proud to donate to this organization.

 
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Rating: 5 stars  

1 person found this review helpful

My 22 year old daughter has TSC. We have utilized the services of TSA her whole life. We are grateful for their continued assistance through the maze of the complications of TSC

 
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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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