A Very Special Day

This past Sunday, Sept 21 we were very honored to host 11 families and their children with various rare diseases. This was an incredibly powerful day for The Project team. We were able to hear from these families, their stories, their challenges and were able to meet their amazing children. Totally inspiring, these families reminded us of 'why' we are building The Project - The Children's Rare Disease Network, and the importance of our mission.

I am absolutely in awe of these parents, they are true superheros, they need to be commended, and they all need our support. Some of the diseases and charities represented were; Ring Chromosome 21, Fragile X, Juvenile Dermatomyocitis, Williams Syndrome, Rett Syndrome, Angelman's Syndrome, some still undiagnosed, Cure JM, CureEmilynow, Surfers Healing. Other Charities/Syndromes that we have been communicating with are AT Children's Project, Savannah's Organic Ranch and Jouberts Syndrome.

Thank you to all who participated, please forward this blog on to your friends and those that need to be kept abreast of our efforts.