Genny Moore

Team Captain CHRIS & JOHNNY'S CREW 2017 Walk (Chicago, IL)

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Dear Friends & Family!

Thank you for visiting my personal fundraising page! On Sept. 16th, Chris & Johnny's Crew Hemophilia Walk Team will be participating in the IL HEMOPHILIA WALK at Lincoln Park in Chicago.  This is 1 of nearly 40 sites walking  across the country to raise critical funds in the National Hemophilia Foundation's largest event dedicated to finding better treatments & cures for bleeding disorders and support for the bleeding disorder community.  To date, the National Walk Program has raised more than $20M dollars as this is the 10th year.   I AM PLEASED TO BE PART OF THESE EFFORTS. This is my 3rd year as TEAM CAPTAIN of CHRIS & JOHNNY'S CREW (Millette & Moore Family & Friends).  My personal goal is to raise over $1500 for this worthy cause that is SO NEAR & DEAR TO MY HEART!  

As you may know, my son JOHNNY (now 3 years old) and nephew Christopher (19) have HEMOPHILIA A Severe which means they have less than ONE PERCENT of the Factor VIII blood protein that is needed for their blood to clot efficiently.   As a result of this blood disorder, they bruise easily, take longer to stop bleeding and heal, and have to take medication intravenously to help them clot.  Johnny is on a weekly infusion treatment regimen & has received over 115 infusions in his short life while Christopher is on daily infusions since he has an inhibitor (his body rejects the medication).  We would be lost without the support of these organizations. 

A lot has happened in the past year!  We attended the National Hemophilia Foundation (NHF) and World Hemophilia Federation’s Annual Conference in Orlando, FL last year on a travel scholarship.  We were blessed to attend Hemophilia Federation of America's Symposium in Providence, RI in the spring.  And I'm totally that I will be speaking in a session on Family Planning this month at NHF's Annual Meeting in Chicago.   John & I attended a Parent's Empowerment Program through our local Hemophilia Treatment Center and are also taking classes to be able to give Johnny his intravenous infusions at home. And I've been blessed with the opportunity to provide my insight during the drafting of  LA Kelley Communications most recent publication, Empowering Yourself About Hemophilia.   I look forward to continuously learning about  bleeding disorders, advances in teatments and advocating in any way we can for not only our boys but the entire bleeding disorder community!

WE HOPE THAT WE CAN COUNT OF YOUR SUPPORT TO HELP US IN THESE EFFORTS!   Please do not hesitate to call or e-mail with any questions about the 2017 HEMOPHILIA WALK, how you can assist with FUNDAISING efforts or questions about Hemophilia.  Hundreds of families in our community, and thousands across the country, will benefit from your contributions and the success of the Walk.  TOGETHER WE CAN MAKE A DIFFERENCE!  PLEASE DON'T FORGET TO SHARE MY PAGE!!

WITH MUCH LOVE,

GENNY MOORE

~ THE MOORE FAMILY ~

#DoItForJohnny

 

 

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