Some Recent Efforts

We will soon have a very compelling interim site available for your perusal at www.theprojectcharity.org Please stay tuned for the announcement.

We have also begun a very large Facebook campaign where we are working to get 1 million people to join our cause - The Project Charity, bringing greater awareness to those children and their families affected by rare disease! We are hopeful to get to those numbers before the end of the year when we will launch our 'Dollar Makes A Difference' campaign.

Continue to introduce us to those that you know affected by rare disease, send us links to resources that have been helpful, hospitals and physicians that are working hard to help. Our goal is to have our Childrens Rare Disease Network portal and community up in time for the World Rare Disease Day, Feb 28, 2009!

Exciting times - spread the word! Lets continue to work to Make A Difference!!!

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.