My Nonprofit Reviews
Review for Cure AHC- Alternating Hemiplegia of Childhood, Rolesville, NC, USA
Cure AHC provides a much needed resource to families whose lives are changed with the diagnosis of Alternating Hemiplegia of Childhood. While physicians and researchers work hard for a cure, it is this group where families find comfort and support. As we wait for a cure, it is through this group we connect with one another to ask questions, get ideas and gain insights into our affected loved ones. Questions answered in this group are often more helpful than answers we find through our physicians. We are the experts in this disorder. We live it every day. Having this group for discussion and networking, alleviates some of the frustration that comes with living with a rare disease. That is a blessing.
Review for Alternating Hemiplegia of Childhood Foundation Inc, Southfield, MI, USA
My daughter was diagnosed with AHC in October of 2013 at nine months old. A quick google search led me to the foundation. They are understanding and supportive of the children and their families. The fundraising efforts are amazing and with more recognition this group will be unstoppable. Meeting others at the family conference earlier this year was so helpful in understanding this diagnosis and the foundation made that possible. Madelyn's mom, Mt Pleasant SC.