Cystinosis is a rare, inherited, metabolic disease that is characterized by the abnormal accumulation of the amino acid cystine in each cell. The build-up of cystine in the cells slowly and eventually destroys all major organs of the body including the kidneys, liver, eyes, muscles, bone marrow, thyroid and brain. Although medication is available to control some of the symptoms of this insidious disease, Cystinosis remains incurable.
Friday, February 29, 2008
I was in Texas when my younger brother called- his voice was serious, his tone seemed---humbled---if that describes a tone. He told me---you have some pretty awesome friends---last night about 30 of them got together---they want to do something for Holt. I called Phillips Bragg (one of the organizers)--he told me "all you have to do is say yes". He said, "people just want to help". I said yes.
I'm not certain how many times they got together as a group but I do know that there was at least a weekly meeting and several (many) very long days. In about 8 short weeks, Chris Barry, Danny Kelly, my kid brother Brandon, Katherine Davis and Phillips ultimately led the charge that produced the "Our Hearts for Holt" reception at the VanLandingham estate in Charlotte---approximately 250 people attended and raised well over $75,000---all of which will go directly to The Cystinosis Research Foundation. CRF has their own Scientific Review Board who oversee a biannual call for proposals and directly fund the doctors, scientists and research fellows who are working towards a cure. Recent press release revealed that this research has produced a technology which in the next few years could enable a 12 hour dose instead of 6---that is REAL progress. It's not a cure, but to think Holt could some day get a full night of rest is almost the next best thing. Your contributions do make a difference.
There were so many people who were incredibly generous with their time, their money, their compassion-- I'm certain I cannot name them all--I'm concerned that I may leave someone out...I'm positive that I will and my apologies if I do. Chrissy and I were completely overwhelmed; it took us two full days after the event to really even begin to get back to some state of normal. The event stirred so many emotions that we literally walked around in a somewhat comotose state absorbing it all in. An old boss and dear friend Pat Bennett and his wife flew in from Baltimore. Davis Robinson called in favors for auction items, Freeman Barber graciously donated an amazing fishing trip, Mary Margaret and Elton Vogel thank you so much-- dontated their Mountain House, Richard Petty Driving experience and a whole host of other items, Joe and Ann Douglas flew in from Tampa, Jeff Sockwell (somewhere in Asia) sent in a VERY generous dontation, Chad Cooke bid on just about everything, Scott Fisher who helps me keep my thoughts straight, Matt Livingston and 17 of his friends are going to the beach, Charles Thrift, The Woldmans, Harrison Jones, Tony Pizzo, Danny Sanford and Matt Manuci donated all of Napa Valley, Jamie Shipley cant say thanks enough for all of your help, Rich Van Tassell came and donated a beach house, Mike Lehman and Chris Lutkowski came in from Georgia, Hermann Moore the auctioneer and generous donor of a beach house, Andy and Mary Griffin donated a very nice personal chef service, Phillips Bragg donated a 100 person pig pickin, Chris Rozak, the McAfee leadership team (lead by an incredibly generous and understanding Barry McPherson), McBride Internet and Latitude35 donated a website, Justin Claytor sold gosh knows how many tickets, Barry Parks, Eric Broadway rallied his troops, ----Chris Barry---, Katherine Davis, John and Rosie Booth, Carole and Fred Bradley, Eddie Grier, Brandon Grier, David Turton and a very generous Nike rep, eGolf, Southern Mechanical, Gregory/Grier, Kelly McArdle, Bragg Financial, Ann Wilkinson, The Doerings, Gulledges, Miyares and Gambas, Mike and David Tanksley, Chad and Nila, The Baucoms, The Beards, The Whitleys, The Hesters, The Growneys, Jonathan Ward, Aubrey Grier---our rock, Joyce, Harrison Ellinwood, Justin Reveles, The Mahars, The Blythes, Josh Chambers, Jeff Daniels, Amy Wright, Banks and Ben Bourne,Hiram and Whitney, Brian and Robin Grier, Whitney Brackett, John McAuley, Amy Green, Dr. McKay, Frances Phillips who called in a favor to Molly Shannon of WBTV, Dan McArdle, Todd and Libby Allison and their amazing 9 year old daughter who continually finds creative ways to raise on Holts behalf, John Griffin, Mariette Booth, Trish Maguire, Matt Hagler, Frank Maynard, The Wolters, The Thornes, The Styborskis, The Wolfes, Jennifer and Tim Phillips, Lea Dunn Tackett, Brent Bagwell, The Harmons, Kriten Nell,The Proctors, The Pedersons, The Rocks, The Burnettes, Trey Clodfelter, all of your spouses ---that's about 1/3rd of those who helped make this such a special night for us---I'm trying to do this from memory---i know I'm leaving a ton of very generous people off of this---this is just people who were there---there were countless others who helped who were not able to attend.
It took me a couple of weeks to write because I honestly just dont know what to say---I still dont. You have all touched our lives in a very meaningful way---what you did will make a difference. You raised and donated enough to fund a study--a study which will get us closer to a cure and most certainly a step which will help Holt live a better life. Thank you all so very very much.