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Jill33

348 profile views
1 reviews

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

Rating: 5 stars  

I have three kids, a husband, a sister in law and her two children, all with Tuberous Sclerosis. I do not know what I'd do without the Tuberous Sclerosis Alliance. I have been learning about TSC since my 16 year old was diagnosed in 1996. My husband, who has the condition, was diagnosed at the same time. Life has been a roller coaster of medical procedures, hospital stays, office visits, new medications, IEPs, and through it all, I could rely on the Tuberous Sclerosis Alliance to reassure me that I could and would meet the challenges this conditions presents, for my family. Stories of success and triumph and living with the condition as well as guidance in selecting everything from physicians to speech therapists, I found a resource! I cannot be more grateful to those who have done so very much for this organization, and as my kids grow older and they become less dependant, I hope to give back some of what has been freely and graciously given to me. Thanks TS Alliance!!!

Would you volunteer for this group again?

Likely

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?

2012

Role:  Volunteer