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Kerryanne

82 profile views
2 reviews

Review for National Tuberous Sclerosis Association Inc, Silver Spring, MD, USA

Rating: 4 stars  

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.

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

Role:  Client Served

Review for National Tuberous Sclerosis Association Inc, Silver Spring, MD, USA

Rating: 5 stars  

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.

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

Role:  Volunteer