FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

Fundraising MythsAt the FA Family Meeting atCamp Sunshine, FA parent and cofounderof the FA Research Fund,Dave Frohnmayer, discussed themyths and rationalizations that familiessometimes use not to raise funds.Dave identified such myths as:• I can’t raise enough money to makea difference.• My friends don’t want to help.• I would be embarrassed to asksomeone for funds.• It would devastate me if my neighbors(relatives or friends) did notdonate if I asked.• It would embarrass my FA child ifI were to ask others for funds for FAresearch.• I need to focus my efforts on bonemarrow drives.• I don’t know how to raise money.• I don’t have the time.• We really need to find a Hollywoodcelebrity (or athlete) to raise fundsfor us.• The benefits from research are toofar away, so why should I waste mytime raising funds?Dave pointed out that every dimeraised makes a difference, especiallysince no one else is going to raisefunds for FA research if parents donot do it. Foundations and otherdonors are impressed with a broaddonor base, even if individual donationsare small. He noted that, justas no one is embarrassed to ask adoctor for help, there is no stigmaattached to raising funds for researchthat can benefit all those with FA.Dave observed thatfriends, in fact, do wantto help and are eager todonate. While everyonehas had the experience ofhaving friends or relativeswho do not donate,it is important not topersonalize theirresponse as a rejection.These individuals maychoose to help in a differentway or have theirown problems.Contrary to the myththat fundraising embarrassesa child, Dave andothers find that childrenare encouraged that theirparents are trying to advance FAresearch and pleased to know thatothers are pitching in to help.Dave, as a founding member ofthe National Marrow Donor Program,acknowledged the importanceof bone marrow drives. However,many in the general population areconducting those drives whereas fewin the general population are raisingfunds for FA research. If there is achoice between doing one or theother, funding FA research wouldseem to be more important to ourgroup. Dave encourages FA familiesto find the time to do both if theycan.When will we ever have “time”? Itdepends on what we choose as priorities.Dave notes that he and Lynnsimply have had to make time intheir extremely busy schedules toraise funds. They literally spend daysduring Christmas vacation writingpersonal thank you notes to theirdonors. They make this a priority, asthe best use of their limited time.Dave observed that it is easy, andcompletely ineffective, to defer one’sown responsibility for fundraising tothe elusive “Hollywood celebrity.”Dave Frohnmayer discusses fundraising mythsat Family Meeting.The Fund has benefited from donationsfrom celebrities and billionairesbut, even if a celebrity raised fundsfor us, we would still need the effortsof all FA families, given the high costof advancing FA research rapidly.The last myth, regarding thefutility of raising funds because thebenefits from research are so faraway, is not true. The FanconiAnemia Research Fund may be thesingle most effective rare diseasefundraising group in the world.Since 1989, fifteen short years, FAscience has advanced rapidly, simplybecause of the funds raised by FAparents. Had it not been for theirefforts, researchers would not befinancially able to study FA, nogenes would have been identified,and bone marrow transplant successrates would be extremely poor.Myths notwithstanding, fundraisingby FA families has made all thedifference. ◆16 FA Family Newsletter