FA Family Newsletter - Fanconi Anemia Research Fund

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Campers List One-Word RavesIn the last support session of the 2011 Fanconi AnemiaFamily Meeting, led by Nancy Cincotta, MSW, MPhil,of Camp Sunshine, participants were asked to say oneword to describe their experience at Camp. Following aresome responses:Family NewsJulia Flynn, who has FA, receives a warm welcome tothe Family Meeting.Looking for the Perfect Fanconi Anemia Sundae?By Stephanie Griggs, FA Parent and First-time FA Family Meeting ParticipantCamp Sunshine was….geez, how can I possibly describe Camp Sunshinein words? Camp Sunshine was exactly what our family needed. It wasthe perfect Fanconi anemia sundae. A scoop of rest and relaxation, a bitof excitement and entertainment, and a whole lot of fun and friends, allcovered with oooey gooey gobs of FA information and support, sprinkledwith nuttiness and topped off with a cherry of HOPE.12 Family Newsletter #50
A FANTABULOUS Experience for FA FamiliesFamily NewsFifty-nine families from eight countries enjoy the FA Family Meeting, held at Camp Sunshine in Casco, Maine.Fifty-nine families—including 14 first-time families—gathered at Camp Sunshine in Casco, Maine, in June forthe Fund’s 20 th annual FA Family Meeting. Once again,Camp Sunshine proved an ideal setting for busy daysfilled with educational sessions, support groups and funrecreational activities.Forty-eight children and six adults with Fanconianemia attended the meeting along with parents, siblingsand extended family members, for a total attendance of227. Attendees traveled from eight countries: Canada,Denmark, Israel, France, Australia, Germany, the UnitedKingdom and the United States.Highlights from the educational agenda includedupdates from several bone marrow transplantation(BMT) centers, sessions on head and neck cancer,fertility preservation, psychosocial issues related to BMT,and a look at exciting FA research currently under way inlabs around the world. Amy Frohnmayer, an adult withFA and a long-time Camp Sunshine attendee, shared theresults from a study she conducted about adults copingwith FA, and two parent panels recounted their personaljourneys related to BMTs and Preimplantation GeneticDiagnosis (PGD). Thanks to Mary Ann and DavidFiaschetti, Diane and Mark Pearl, and Lynn and DaveFrohnmayer for participating on the BMT panel, and toLorne Shelson and Annette Waxberg, Pedro and MarinaRavelo, and Yavin Atzmon and Sharon Harari for sharingtheir PGD stories.Camp Sunshine proved an idealsetting for busy days filled witheducational sessions, supportgroups and fun recreationalactivities.Scores of caring volunteers, along with dedicated campstaff, made sure that smiles were in abundance, and thatattendees were well satisfied with good food and fondmemories.Family Newsletter #50 13
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: Living with Fanconi AnemiaBy Mary G
Page 15 and 16: The Sum of All Fears: A Single Mom
Page 17 and 18: Kids from FA Families Pitch in to R
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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