FA Family Newsletter - Fanconi Anemia Research Fund

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