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: 5 stars  

As the father of a son affected with TSC the TS Alliance has been a tremendous resource to our family. The group is comprised of passionate individuals who care deeply for improving the lives of those affected and ultimately finding a cure. They are truly inspirational.

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?

2013

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1 previous review
Rating: 5 stars  

The TS Alliance has been an unbelievable resource to my family and others affected by TS. Kari and her team are a passionate group of people who are dedicated to finding a cure while improving the lives of those affected. I am proud and honored to join the cause as a Board member of the TS Alliance come January.

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

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I have been associated with the Tuberous Sclerosis Alliance for 9 years. I joined because my grandson was diagnosed with the disease. I am now a Board member. I ave seen major improvements of this organization under the leadership of its Executive Director. We had to reorganize several times and had to relieve staff to achieve our goals. The Board works closely with the President/Executive Director to ensure our financial data is nothing but perfect. We have had to cut back at times on expenses to meet our budget. There is an aggressive fund raising effort as well as seeking foundation grants. I am pleased to see this organization constantly improve itself. it has offered advice to those families that have a child or an adult with TSC Theodore Mastroianni

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

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

For the past 15 years I have known that the first place to turn for accurate, up to date information about tuberous scelrosis complex (TSC) is the National Tuberous Sclerosis Association dba the Tuberous Sclerosis Alliance. My infant son was just five months old when he began having infantile spasms - a catastrophic seizure disorder - and was diagnosed with TSC. Internet searches yielded gloomy predictions and offered little to be optimistic about or even to hope for. The staff at the TS Alliance was able to provide current treatment and intervention information as well as identify experts in the field. Today the Tuberous Sclerosis Alliance is an international leader bringing together the best researchers and clinicians in the world to further the mission of finding a cure for TSC while improving the lives of those affected. The Tuberous Sclerosis Alliance involves the individuals affected by the disorder at all levels of planning, strategizing and decision making . They offer opportunities for empowerment through the participation in clinical trials, research reviews, community outreach and support; and government advocacy. A child born today with TSC has the hope of a much brighter future because of the efforts of the Tuberous Sclerosis Alliance's staff, Board, constituents, volunteers, clinicians, researchers and communtiy supporters.

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  

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  

The Tuberous Sclerosis Association (TSA) is a remarkable organization that provides guidance, wisdom,, direction, and hope for individuals with Tuberous Sclerosis Complex, a potentially devastating genetic disorder causing epilepsy, cognitive disabilities, autism, lung disease, kidney tumors, and skin lesions. The TSA has both national and international outreach and is a source of public health information, advocacy, and social connection for patients, family members, and friends affected by TSC. The TSA is also a source of biomedical research funding for researchers and clinicians to help identify new treatments for affected individuals. TSA has been a model organization mobilizing scientists and clinicians towards bold new research in TSC. It has been my pleasure to have served in various capacities in TSA (Professional Advisory Board, Scientific Advisory Board, Board of Directors) for the past decade. A truly remarkable organization.

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

Likely

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

Was this review helpful?