FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

Why Our Family Decided To Raise Funds For FA Researchby Peg PaddenLess than a year and a half ago,our 21-year-old son, Jake, was diagnosedwith FA. Our two youngersons, Conor (18) and Spencer (15),were tested to see if they were a bonemarrow match for Spencer’s transplant.We were so happy whenSpencer was found to be a match,only to find out he also had FA.Last July, Jake had a transplant,using a partially matched unrelateddonor.Tragically, Jake did not make it,and he passed away last October. Ifigured I had a choice. I could lie inbed and cry all day (which wouldhave been very easy to do) or I couldforce myself to take some action anddo something to help Spencer andothers with this difficult disease. Ie-mailed our doctor (John Wagner)in Minneapolis and asked him if hethought the majority of my timewould be better spent working withthe Red Cross to get more people onthe bone marrow registry, since westill don’t have a complete match forSpencer, or to raise funds for FAresearch. Dr. Wagner said that,although both are obviously important,the most important thing wecan do right now is to make transplantssafer by funding research.So I thought, O.K., we’ll have anauction. I knew absolutely nothingabout putting on an auction, butfigured anything we made would bebetter than nothing. If we made$1,000, that would be $1,000 thatthe Fanconi Anemia Research Fundotherwise would not have. We putthe auction on in three months andwere absolutely stunned when wemade $106,000.The money we made was tremendous,but something else happenedthat we had not expected. Having theauction started a chain reaction withour family and friends. My cousin’sson (whom we see maybe once everytwo years) convinced the companyhe works for to have their golf tournamentraise money for a charity thisyear. And, of course, that charity wasthe Fanconi Anemia Research Fund.They made approximately $2,500.My husband’s old friend from lawschool (whom we see once or twice ayear) had a golf tournament, BBQ,and raffle a couple weeks ago andraised $6,000. Jake’s good childhoodfriend who, at the age of 21 directeda play in New York this summer, isplanning on directing another playand having all the money go for FAresearch. Our niece came up with theidea to get as many people as possibleto run or walk the Las Vegas Marathonin honor of Jake and, at the sametime, get sponsors for Fanconiresearch. Just yesterday, our 14-yearoldniece called to tell us that theclub she belongs to had $106 leftover in its treasury, and they decidedto give it to the Fanconi AnemiaJake, Spencer and Conor ShearerResearch Fund. I’m thinking ofputting on a 5K run/walk specificallyfor Fanconi anemia sometime thisspring.The point is, if you can do anythingto raise money for research, doit! It doesn’t have to be big. Every bithelps. Obviously, the more peopleinvolved, the more it adds up. And,who knows? If you do something,people you know might get the ideato do something. Any amount youraise will go for research, and it isresearch that can save our childrens’lives. It does not get any bigger thanthat. Warren Buffet said it well: “It isnot necessary to do extraordinarythings to get extraordinary results.” ◆Fall 2004 15