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June 4, 2013

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1 previous review
October 26, 2012

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 li... more

June 4, 2013

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.

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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

October 26, 2012

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.

More feedback...

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

October 29, 2012
1 person found this review helpful

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October 29, 2012
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

More feedback...

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

October 26, 2012
1 person found this review helpful

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October 26, 2012
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.

More feedback...

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

October 26, 2012

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October 26, 2012

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.

More feedback...

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

October 26, 2012

more

October 26, 2012

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.

More feedback...

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

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