This Letter(Below) arrived from The Jeffrey Modell Foundation. We are pleased to announce that we have a Specific Use for the money that WE have raised, that YOU have raised. This new "Roots and Wings" goes hand and hand with Newborn Screening because children that are diagnosed at birth with SCID may not be able to afford all the expenses surrounding the Bone Marrow Transplant. Dear Kellie and Brad, We were so excited by the results of your “Links for Liam” Golf Tournament this year! It is always incredible to see your emails and the work that you have done year after year, in memory of Liam. It is our hope that together we can put meaning behind these funds that you have raised and use them for something that is close to our heart, and which we know is extremely close to yours. Fred and I have been on a journey for the last twenty-six years, and we have accomplished more than we had ever imagined. But our greatest passion, and perhaps the most rewarding achievement, has been the initiation of Newborn Screening for SCID in the US. We have advocated in Congress tirelessly for the last 10 years, and finally have seen great progress. Recently the Jeffrey Modell Foundation created a new Program, “Roots & Wings”, to work hand-in-hand with the NBS Statewide efforts. This Program is to assist children who have been identified at birth with a life threatening Primary Immunodeficiency, like SCID. “Roots & Wings” will provide travel (the “Wings”) and related support (the “Roots”) to families whose child might need a bone marrow transplant and have to travel a great distance for this life-saving procedure. Families often have to stay in a Ronald McDonald House for many months, and they may not have the funds to do so. We would like to make life easier for these families and enable the child to have a chance at life. “Links for Liam” has impressively raised $40,324.77 to date. We would like to suggest that all or a portion of the funds raised by “Links for Liam” be directed to this Program, so that we can continue to provide hope to families across the nation and the necessary “Roots & Wings” to save many precious lives. We are so proud of the results of this Program, and we know you will be too. We have provided “Roots” and “Wings” to several families, and the gratification and pleasure that we have received from this is incomparable. Please let us know your thoughts and wishes, so that we can move forward, together, to improve the quality of life of these babies…and maybe even save a few. With our warmest regards, Vicki and Fred
Posted on: Wed, 11 Sep 2013 14:24:50 +0000
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