Tuesday, June 15, 2010

Every Step Family Walk 2010

This July, Bill & I will again be fortunate enough to travel to Java, New York to attend the Hunter's Hope Family and Medical Symposium. The Symposium concludes with an Every Step Family Walk.

This is a perfect way for Bill and I to give back to Hunter's Hope. Last year, Bill and I alone raised almost $500. But this year, through Hunter's Hope, we have our own page for fundraising (allowing donations to be taken online) and are allowed to have a "virtual"team to help us raise funds.

So let me try to explain how this whole thing can work. I have created a team, Grey's Gifts. Friends and family can simply go to Grey's Page and sponsor a team member, or join as a "virtual walker" on our team. Once a "virtual walker", they can create their own page and seek sponsors of their own.

There is the potential for us to raise a lot of money for Hunter's Hope. I know that Texans are a proud group of people. I also know that many of you are very possessive of our Little Man (which makes my heart swell). Most of all I realize, that after all that we have been through, it is hard for you to let your money go to New York, when we as a state still have so much to do to fix our broken newborn screening program. And I promise, Bill and I are doing everything we can to do that. We will always put Texas first, if not with funds, surly with our hearts. Bill has secured a six year term on the Newborn Screening Advisory Committee. From here on out, that is the only committee that can make decisions for our program. I promise, Bill will not let you down. He and I are also busy trying to educate the community, speaking at local hospitals, organizations, and camps. But on a larger scale, we need Hunter's Hope.

Hunter's Hope keeps us in contact with leading doctors, geneticists, screening companies (such as Perkin Elmer), and members of the ACMG (the leading decision-making body of newborn screening), all important to improving our newborn screening program here at home. They keep us connected to other affected families, in turn helping us to heal. Hunter's Hope also continuously strives to educate others of the importance of Universal Newborn Screening. They help families with children affected by Krabbe and other Leukodystrophies, both emotionally and monetarily, providing them a place to stay should their baby be eligible for a cord blood transplant and/or expensive medical equiptment. Most importantly, they fund research, through their own center, to help find a cure for the horrible disease that took our son.

I'd like to thank those of you that have already given so freely to our team. We are half way to our goal of raising $1000. If you have yet to make a decision, I would urge you to take a look at the bigger picture. Grey was born in Texas. But another baby, just like Grey, will soon be born in another state, a state too far away to hear me shout, no matter how hard I try. Hunter's Hope has that ability to reach them. Please help my family to support them, in memory of Grey.

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