National Tuberous Sclerosis Association Inc
June 4, 2013
When my 14-year-old son was diagnosed at 2 months of age I had never heard of tuberous sclerosis complex. My husband and I were shocked and scared. We didn't know what to expect. We were very fortunate that our son's geneticist had recently been to a conference where he learned about TSC and referred us to the NTSA, now the TS Alliance. I have met some of the greatest people I have the honor of calling friends who not only shared their stories with me but also helped me get through those tough times of seizures with my son. The TS Alliance does more than just raise awareness and funding for research - they also connect adults and families of children with others so that we don't have to go through it alone. These people are genuine in their caring for the community and in their commitment to finding a cure!
Ways to make it better...
If I had to make changes to this organization, I would...
try to find a way where they could spend more time with the community. They work very hard and travel to help with walks held nationwide, fundraisers and regional conferences, as well as putting together web and phone conferences with specialists, and working with volunteers and board members with our March on Capitol Hill to guarantee support for research funding.
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