My Nonprofit Reviews
Kerryanne
Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA
I had never heard of Tuberous Sclerosis before my son's diagnosis. I was at a complete loss about what it meant for him. Our neurologist put me in touch with the Tuberous Sclerosis Alliance and I was so impressed upon first reaching out to them that I immediately offered to volunteer in whatever capacity I could. It has provided me a wealth of information and connected me with a community that provides enormous support to those living with TSC. I can't express just how much this organization means to all of the families it helps.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2013
Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA
I'm a volunteer, but also a client served. The Tuberous Sclerosis Alliance has been a wonderful resource for my family, particularly since we had never even heard of this condition until my son was diagnosed earlier this year. We were devastated, knowing only what we found via "google" when the diagnosis was first conveyed. Once we were connected with the TS Alliance, however, we felt like we understood better the implications for our son, and were better able to cope. In fact, I felt so good about the organization, I immediately volunteered as the education liaison in Massachusetts, and hope to participate in the Alliance's legislative advocacy efforts. In sum, the education resources and advocacy efforts of the Alliance truly make a difference for families affected by TS.
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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?
2012
