On August 24th, 2012, Team Mackenzie held a spaghetti feed dinner to raise money. The food was awesome, there was a silent auction, raffle tickets and a LOT of people and a LOT of support for Mackenzie and her family.
I just received word from Mackenzie's mom that Team Mackenzie achieved our goal by raising enough money to start a nonprofit organization for Ollier's Disease. This is fantastic news because currently, Ollier's is SO rare that there really isn't a lot of support in place for families facing this diagnosis. (I'm told that Ollier's numbers are actually 3 people in a MILLION will be diagnosed with this disease, which is contrary to the information I found online and posted previously.) To make matters worse, because this disease is so rare, there is NO protocol in place for monitoring and treating Ollier's Disease. Our goal is to start getting these things in place and to provide a place for families to turn for support. No one should have to face a disease with little to no knowledge of what they are dealing with and what they are up against and we are out to change that. The long term goal is to start a foundation for Ollier's Disease... and it looks like we are off and running.
As we get organized and more information becomes available, I will be keeping this blog updated. Please follow us so you can stay in the know. And as always, if you have information on Ollier's Disease that you would like to share or would like to share your story on this blog, feel free to send it to me via email at marilyn.russell08@gmail.com.
Thank you so much!!!
Team Mackenzie
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