My Nonprofit Reviews

Parenting a child with a disability and figuring out the various services/systems (special education, medicaid, medicare, social security, etc) is DAUNTING! But Family to Family Network is staffed by knowledgeable experts with lived experience...and their encouragement to live a life in spite of disability is a message too few hear and NEED TO HEAR in this world! They are THE BEST.

Diagnosed with this rare disease 33 years ago (our son david), few medical professionals had ever seen anyone with the disease, certainly none in our rural east Texas town. And docs who had seen patients with it still knew so little! The TS Alliance was a constant source of information, research, answers and support. With their help, we were able to participate in research that ultimately identified not just one but two genes responsible for the disease and learned we don't carry that gene. David was a sporadic mutation. Fast foward 33 years, and this year our son and I attended the World Conference in Dallas. Spendng 4 days with a world (literally!) of people who KNEW about and often lived with this disease was an astounding experience for both of us!!!! And to learn of new research leading to the diagnosis of TAND (Tuberous Sclerosis Complex Associate Neuropsychiatric Disorders) was a profound affirmation of what we've always believed. SO GRATEFUL for the TSC Alliance!!!!!

Family to Family Network provides innovative information, support, and HOPE to families who too often only find outdated, uninformed, and hopeless information from "the experts" paid to provide services to the family and their child/young adult. Family to Family's experts are TRUE EXPERTS, families who have navigated the service systems (often for many years) themselves and can provide the kinds of information families desperately need and want...while simultaneously helping families see beyond their child's disability to who that child is as a person, a beloved family member, an important member of their community. We are thankful for Family to Family Network's walking by our side for 25+ years!

We've been associated with this organization since our son was diagnosed with this rare disease 32 years ago; they were one of the very few resources out there and everything available was in print! Over the years we've watched the organization grow, improve, develop new helpful materials and resources, and stay very connected with its membership.