FA Family Newsletter - Fanconi Anemia Research Fund

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French Family Support Group Celebrates 20 YearsBy Charles BichetFamily NewsThe French Family Support Group celebrates 20years with a trip to Disneyland Paris.Under a warm spring sun, Disneyland Paris offereda perfect setting for a two-day celebration of theAssociation Française de la Maladie de Fanconi’s (AFMF)20 years in existence.Thirty Fanconi anemia patients and families came fromall over France, Ralf Dietrich and Eunike Velleur camefrom Germany, and a family even came from the UnitedKingdom. A few friends and half a dozen volunteershelped us manage the excitement of the kids. All together,about 100 people attended the celebration. We were quitea spirited party, determined to make the happening oneof hope, friendship and a celebration of life.First, we all gathered for a superb buffet lunch onSaturday which gave everyone the necessary energy forthe festivities. We enjoyed meeting old friends again,getting to know new families and hearing news aboutthose who weren’t able to attend. It was fun to blow outthe candles on our anniversary cake!The afternoon was dedicated to the formal supportgroup session, focusing on practical life matters andfurther FA-related exchanges between the families,including the young FA adults. By early evening, weentered Disneyland Paris theme park and bumped intoone another throughout the evening.On Sunday, our group had breakfast and spent moretime enjoying the theme park. It was quite a memorableevent for all, especially the children. Thanks to ourvarious sponsors, including Disneyland Paris, as wellas to those families who contributed to organizing andfinancing this wonderful event!What’s next for AFMF?The group will continue toprovide support for adults withFanconi anemia and FA familymembers, develop relationshipswith other FA groups, and focuson funding FA research in thenear future.In Loving Memory“For some moments in life there are no words.”John Hanna..................... 5/31/72 – 3/26/11Edwin Ferreira................ 2/6/84 - 5/18/11Justin Barbier.................. 4/30/85 – 7/17/11Katrina Aggabao............. 4/29/05 – 8/30/1116 Family Newsletter #50
Kids from FA Families Pitch in to Raise MoneyTo Support ResearchChildren from families affected by Fanconi anemiaare proving that fundraising isn’t just for adults. At theFA Family Meeting in June, Kevin McQueen, FA parentand Fanconi Anemia Research Fund board member, andBev Mayhew, the Fund’s Executive Director, handed outawards to “Kids Helping Kids,” in recognition of somehighly committed junior fundraisers. Here are somehighlights of the work kids did to help raise funds forFA research:• Benjamin Morrison held his second Chess Tournamentin honor of FA Day.• Spencer Boggs sold hand cut-outs at school and pitchedin to help make his family’s Fun Day for FA a big success.• Devin Fales participated in Kicks for FA, a karateexhibition.• Austin Jaros-Riley helped his family make their firstCosmic Bowl-a-thon an event to remember.• Matt and Alexandra Pearl spearheaded their secondKick FA kickball tournament and, along with SeanMcQueen, participated in the Climb for a Cure event.• Peter Fiaschetti held a penny drive while recoveringfrom his bone marrow transplant last year.Please join the Fund in thanking these inspiringfundraisers.FundraisingPersonal Tragedy Leads to Large Donationothers afflicted with this disease, as well as their families.Hopefully, this contribution will provide monies neededfor research, and provide doctors and scientists withsupport that will allow them to continue to work and todiscover a cure for this illness that has taken far too manyprecious lives already.” He noted that at the time of hisbrother’s death in 1962, his family was told by MaxStrumia, MD, at Bryn Mawr Hospital in Philadelphia,that there were only 47 living FA patients in the worldand that Michael Alan, at age 9, was the oldest survivor.Melody Ann and Michael Alan Miller, two siblingswho passed away decades ago from Fanconianemia.Mrs. Gloria J. Miller of Bethlehem, Pa., who lost twochildren to Fanconi anemia many years ago, has turnedher personal tragedy into hope for many others througha very generous gift of $250,000 to the Fanconi AnemiaResearch Fund. Mrs. Miller made this extraordinarycontribution to support research as a tribute to her5-year-old daughter, Melody Ann, whom she lost to FAin 1951, and to her 9-year-old son, Michael Alan, whodied of FA in 1962.According to her son, Jody Miller, “My mother’sfondest and deepest desire is that this gift will help“My mother’s fondest and deepest desireis that this gift will help others afflictedwith this disease, as well as their families.Hopefully, this contribution will providemonies needed for research, and providedoctors and scientists with support thatwill allow them to continue to work and todiscover a cure for this illness that has takenfar too many precious lives already.”“What an amazing, unexpected gift this is,” says LynnFrohnmayer, Fund co-founder and board member, “andhow tragic the familiar circumstances leading to thisincredible generosity. We are humbled and heartened byMrs. Miller’s spectacular philanthropy.”Family Newsletter #50 17
Page 3 and 4: Early Gynecological Care is Essenti
Page 5 and 6: Plans Under Way to Study FA Parenta
Page 7 and 8: Psychological/Social Issues Affect
Page 9 and 10: Minnesota Reports on Transplant Out
Page 11 and 12: Living with Fanconi AnemiaBy Mary G
Page 13 and 14: A FANTABULOUS Experience for FA Fam
Page 15: The Sum of All Fears: A Single Mom
Page 19 and 20: Everything Old is New AgainBy Jeann
Page 21 and 22: Door to Door SuccessJack Timperley,
Page 23 and 24: Researchers and Clinicians to Conve

FA Family Newsletter - Fanconi Anemia Research Fund

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