Monday, September 22, 2008

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.

Wednesday, September 17, 2008

World Rare Disease Day Announced

We are very pleased to announce and support for the first time in the US - the World Rare Disease Day, scheduled for February 28, 2009.

Stay tuned on activities in your area related to this important day!

Call with questions.

Nicole Boice
The Project

Introducing: The Children's Rare Disease Network

The Project Charity is pleased to announce that it will be building one of the most comprehensive and important collaborative sites for Rare Disease. We will be working over the next couple of months to aggregate information, resources, information on charities, rare diseases, activities, communities, etc.

We would love your feedback and input so please feel free to contact us. Stay tuned as we build out this important community, we will keep you posted to our progress.

Nicole Boice

Friday, September 5, 2008

Rare Diseases Aren't so Rare!!!!


Well we are continuing to progress and our efforts are being commended! We are truly on track to build an organization that will embrace this very segmented populace and bring them together in a collaborative communicative environment! We are currently building out what will be a very important community online, that will tie together resources, parents & their children, provide social networking capabilities, tie science to people, become an education tool for physicians, etc. Yes our goals are lofty, but necessary. We will work until we have connected all these contingencies so very important to the success of this initiative.

We will build global partnerships with organizations that have already had important successes. We will create one community all talking, sharing ideas, consoling, communicating and more importantly collaborating together. Bringing more awareness, more money, more resources to this important segment of the world population.

Let's make a difference!
Please contact me at 949.305.8656 or