Product Partners

The Project is happy to announce two product partnerships, the first of many. Cynthia H. Designs will be creating a special commemorative bangle bracelet that includes sketches from children affected by rare disease. This will be available in late January, just in time for February and World Rare Disease Day. We will also be working with this organization to help promote and sell their fabulous inspirational bracelets. I have personally been a fan for years, and feel so grateful that we are able to work with this amazing designer and her team.

Additionally, we have put in place an arrangement with the famous Herrington Bear Company. We will be promoting their inspirational bear line, and a percentage of the proceeds from sales of these adorable bears will benefit The Project!

Please join us on our site and visit the Product shop to peruse and shop products created by our friends! We hope to continue to add additional products monthly!

Thanks for helping us make a difference!

Nicole

First 'Lunch & Learn' for The Project

Today we hosted our first 'Lunch & Learn'. The purpose was to bring together engaged men and women who wanted to learn more about our cause, and it provided an opportunity for our team to tap the expertise of our participants in areas of philanthropy and business but also provided a platform for networking, sharing stories, etc.

We presented information about rare disease, showcased what the current issues are and how we are planning to address them. We introduced the Children's Rare Disease Network and discussed our fundraising initiatives and efforts. What was interesting is that 80% of those in attendance were touched by rare disease in some way. We were fortunate to have had representation from Williams Syndrome and a rare pediatric cancer, and these brave women were able to share their stories with the group, which allowed our guests to hear first hand about the challenges and problems that they faced when working to diagnose and help their children. They were also able to hear from these women how important they felt The Project's initiatives, mission, goals and objectives were for the rare disease community in total. The afternoon was emotional, but also uplifting, bringing together passionate, committed & innovative individuals provides a platform for incredible discussion and brainstorming.

We are planning to host these throughout the state and have the opportunity to start hosting these throughout the country. We are asking that those that join us put their thinking caps on to help introduce our organization to relevant individuals that can help with expertise in business, science & philanthropy, or that have the financial means to donate and help fund our start up efforts, or those that are well connected personally and professionally to help open doors for our charity and our aggressive initiatives nationally.

Thank you in advance to all that attended. Please feel free to contact us if you think this type of presentation would be of interest in your area.

Make a Difference!

Nicole

Burrill Personalized Medicine Meeting

What a compelling event. What we at The Project will be working on is bringing you all the updates from industry regarding advancements in science, r&d, trends in research, innovations, etc. As frustrated as many are with our healthcare system, I can tell you first hand that we are in an era of unprecedented innovation. The greatest discovery in science has happened in the last 5 years - mapping the humane genome. And with the advent of genetics and genetic testing, we will be able to more quickly diagnose children with rare disease, we will also be able to determine how they will respond to certain drugs. No more wait and see therapies. Stay positive friends, we are at the front end of a movement in medicine that will ultimately bring us Personalized, Predictive and Preventative Medicine - no longer reacting to disease but being proactive!

We will be bringing you our interim site the week of Nov 17th. This will provide you with a better understanding of our larger efforts. So join us at www.theprojectcharity.org frequently, and tell your friends. We are currently working diligently on raising capital for the buildout of this site, so please keep us in mind when looking to find a cause. We will have the opportunity to impact millions of children and thier families - we just need help getting there.

BIO Investor Forum

I had the pleasure of being able to attend the BIO Investor Forum this past week, and was able to hear from incredibly innovative Biotech CEO's discussing their pipeline. It was very compelling to hear more and more of these organizations mentioning some engagement with drugs that are being developed for specific rare diseases. I left the meeting very hopeful.

At The Project, we will be working to keep you all up to date on what is happening in this market, presenting the companies, the drugs, the trials that all will ultimately impact rare disease. We are in a very promising time in medicine.

STAY TUNED

Within the next week, we will officially be launching The Project - The Children's Rare Disease Network interim site. This will be a fully functioning site that will allow us to share what we will be building, the site capabilities, what content we will be aggregating and the partnerships we will be creating. It is a very exciting time for us, and a special thanks to Pike Design and those from the Project that have been working tirelessly to help get this off the ground!

Lots of momentum, so much potential we are at the onset of a huge movement that will have a tremendous impact on these children and their families. Thanks in advance for your generosity and help and for your willingness to embrace these efforts as your own. It takes a village!

All the best,

Nicole Boice

Facebook Cause - Join us!

We are working daily to try to build a broad network on Facebook that will support The Project - The Childrens Rare Disease Network. The beauty of social networking sites like Facebook and Linked In are that they can generate tremendous awareness and support for something very quickly. We would like to hit 1 million members supporting children with rare disease! How amazing to have the world in 3 short months stand up and show that they care.

Join our cause on Facebook and tell your friends - it is listed as The Project Charity! If you can't find it email us and we will get you there!

Technology is an amazing tool - Until next time!!

Nicole

Children Working to make a difference

We hosted our first Kids Helping Kids Advisory Board Meeting. While determining roles and initial goals and objectives, the kids also discussed the efforts that they would like to work on related to World Rare Disease Day.

Stay tuned - we will make announcements soon, but they would like to engage school champions at as many different elementary, middle and high schools across the country! Contact us if you have immediate questions on how you can be part of this great cause!

Nicole Boice
949.305.8656
nicoleb@theprojectcharity.org

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!

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.