Tuesday, November 18, 2008

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!


Saturday, November 15, 2008

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.

Saturday, November 1, 2008

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.


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