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.

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
Founder
The Project
949.305.8656
nicoleb@theprojectcharity.org

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
Founder
949.305.8656
nicoleb@theprojectcharity.org

Rare Diseases Aren't so Rare!!!!

Hello,

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 nicoleb@theprojectcharity.org

We Need Help

Obviously we are going to be reaching out to friends and families for help in many ways - but currently what we need is local children representing various organizations/diseases to be photographed for 'The Project' website, web community and portal for Rare Diseases.

Please reach out to all those that you know who are somewhat local to Orange County, CA that would be willing to join us 1-day within the next month for a photo shoot. We promise we will make it fun.

Please have them contact Nicole Boice for more information, date, times, directions, etc. 949.305.8656!

Thanks much!

We are ROCKIN'

Everyday seems to provide us with some new successes, contacts, people interested in helping. We feel so fortunate that so many are willing to go above and beyond.



Website Status:

We have developed the look and feel of the site (under construction), and are hoping for a soft launch in the next 2 months. This is critical because the site is going to be a key communication hub and educational resource for those families/charities with/supporting kids with rare diseases.



Collaborating:

I realize now that the Europeans are much farther along creating a collaborative environment, and we hope to be able to partner with some of those organizations that have put so much money, time and resources in building what they have. No need to re-create the wheel.



First hires:

I am trying to recruit a web editor/journalist whom the industry has tremendous respect for. This person would bring so much to our web efforts; creating a portal with news, custom articles, with the potential of building newsletters, quarterly publications all with the goal of helping connect families, physicians and the charities that support them.



We have big plans. And we are well underway!