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
Thursday, July 24, 2008
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4 comments:
As a mother to a three year old beautiful little girl with rett syndrome, I greatly admire what you are doing!
Nicole -
I am so happy that you've formally started this organization. I know it's been your passion for many years. I have a good friend who's daughter has Angelman's Syndrome, which from what I understand is very rare. From what I have seen as the fundraising events, it is also very sad. Let me know how we can help!
Ryan
www.insideassistedliving.com
Brooklyn,
Thank you for reaching out to us. Please stay in touch with our organization, we will continue to update and share what the goals of the non-profit are and we are building something that will be very unique, yet provide a valuable resource for the rare disease community as a whole!
Let's spread the word! Thank you for the adorable picture, we may like to get you up on our site as well. Please also make sure that when we go live that we have all the most important information listed for Rett Syndrome! Please send over anything that you feel would be relevant.
All the best,
Nicole
Ryan,
Thanks my friend. Yes, it is becoming a reality FINALLY!!! Angelman's Syndrome - I would like you to introduce me to your friend. We are going to be promoting/highlighting/featuring various rare diseases on our site in addition to choosing new rare diseases every year to benefit from our fundraising efforts - so please let's get together so that I can further these discussions with him. I would like to create a parents board, representing parents of children with the various rare diseases. Perhaps he can get involved as well :0)
Also, Kudos to you on your book!!! I would like to hear more about it!!
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