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keithah

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3 reviews

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

As an individual with TSC, I have been both the beneficiary of the organization's research initiatives and educational programs as well as an enthusiastic volunteer helping it achieve its mission. It is quite remarkable to consider the achievements realized in the 40 plus years of its existence with the discovery of defective genes responsible for this disorder along with treatments to make the disease less burdensome. While no one would ever TSC on anyone, this group does so much for its community to make living with TSC more manageable. It is my ongoing honor to be involved with an organization that makes such a difference to those whose lives are affected.

Role:  Donor
 

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

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

Role:  Board Member
 

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

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

Role:  Board Member