October 28, 2012
The National Tuberous Sclerosis Association (aka, TS Alliance) is a wonderful organization. They have a wealth of information for families effected by TSC and those working with them. The people with the organization are incredibly helpful, friendly, and compassionate, and are more than willing to offer one-on-one assistance to families needing help in any area (medical info, educational advocacy, etc). The website, the Facebook group, the Inspire community forum, the magazine, the fundraising campaigns...every thing the TS Alliance does to reach out to the TS community is great!! Always on a personal level. The TS Alliance also plays an important role in research and in accrediting TS Clinics. My oldest daughter, almost 5 now, has TSC1, with cortical tubers on her brain & AMLs in her kidneys. She has fought the worst odds and always come out on top, and always kept a beautiful smile on her face. When my daughter was diagnosed at age 2.5yrs with TSC, our neurologist, as well as our family doctor, referred us immediately to the TS Alliance website for more information. We have used the fact sheets and other information many times over, in only the past 2.5yrs, and as we did this week when the kidney AMLs were discovered, and will continue to as our journey continues. We know that they are only a message or phone call away if we need assistance on a more personal level. We also know that they'll not let us down. Cannot say enough how incredibly important the TS Alliance is to us, and to so many!!
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MY ROLE:Client Served