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!

Onwards and. . .

This has been a very exciting journey. I will be reaching out to all of those that have been part of this incredible process over the last 4 years; including representatives from Lily Claire Foundation - Williams Syndrome, Fragile X Syndrome, Jouberts Syndrome, Rett Syndrome, AT Childrens Project - Ataxia Telangectasia and many others. We will be going around the country to photograph representatives (children) diagnosed with some of these rare/orphan diseases. I look forward to meeting these kids who are always an inspiration.

We will be linking our site to NORD - National Organization for Rare Diseases who have compiled a database of the over 6,000 rare yet known diseases. We will be trying to formulate a partnership with them and other organizations like theirs because our goals are very synergistic.

I pose one question: If you start asking, I am 100% certain that you will come to know of a child with a rare disease. Many friends, family members, clients, business associates that I have had the fortune of knowing have stories, children of their own, friends of friends who are all affected. Make sure that as we move forward with this charity that you send them our way - we would like to make sure that we know about every charity out their, especially those small ones that need financial help and broader awareness so desperately.

So who do you know? Let's do this for them.

Make a difference! Peace.

Nicole

Update!!

We are moving ahead! Meeting with Pike Design regarding the website. This will obviously be a work in progress but critical at the onset.

Working with my attorney to build the board of directors! We will also be building the business and scientific advisory boards very soon. Tapping many of those that we spoke with at the onset!

Until the site is live, feel free to contact me directly. I would be happy to share the details and even the prospectus! www.theprojectcharity.org Nicole Boice, nboice@hotmail.com 949.680.7088.

Thanks for your interest.

WE ARE LIVE!!!

Thanks to my dear friend Danny Levine, 'The Project' Charity blog is live! This will become part of our website site - www.theprojectcharity.org - so stay tuned. I will provide updates as to progress as we finally get this amazing organization off the ground. A special thanks to Allison Young of Mintz Levin and her firm for taking on all the legal work necessary to make 'The Project' official.

The Project Charity will be a self sustaining granting organization that will focus on helping those families, their children and the organizations that support them. Each of these beneficiaries all have one thing in common - they have been diagnosed with or represent a rare/orphan disease. As part of our mission, we as an organization will also help educate the world about these varied diseases, because collectively, rare diseases affect almost 25 million of our friends and family. We have a responsibility to bring greater awareness to these ever increasing diseases.

We have a very unique and exciting program planned to help our fundraising efforts - this will be announced very soon.

I can be reached by phone 949.305.8656 or temporarily by email at nboice@hotmail.com , with any questions, comments or feedback.