FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

Annual FA Family Meetingcontinued from page 1transplant, and those facing transplant.Some families had attendedthe Family Meeting since its inceptionand others were attending—with trepidation that quickly turnedinto gratitude—for the first time.As always, FA families were awedby the presentation of experts in allaspects of FA who also gave freely oftheir time on this special long weekend.The Fund was honored thatBlanche Alter, MD, MPH, NationalCancer Institute; Akiko Shimamura,MD, PhD, Dana-Farber CancerInstitute; Wolfram Ebell, MD,Charité Hospital, Berlin; MarkHughes, MD, The Genesis GeneticsInstitute, Detroit; Franklin Smith,MD, and Richard Harris, MD,Cincinnati Children’s HospitalMedical Center; and Sarah JaneSchwarzenberg, MD, University ofMinnesota, attended again this year.New presenters included Mary Dasovich,PhD, St. Louis University, whodiscussed educational considerationsfor FA patients; Jeffrey Kim, MD,NIH, who made a presentation onear and hearing problems; ThomasHart, DDS, PhD, NIH, who describedan FA Facial Imaging projectfor possible participation by FAfamilies, and Carter van Waes, MD,NIH, who discussed head and neckcancer.Families sometimes felt overwhelmedwith the wealth of data,The Nash family enjoying Camp Sunshine.much of it complicated. Yet all weregrateful for knowledge that will helpthem deal with FA. As always, familiesdeeply appreciated the listeningear provided by Nancy Cincotta,MSW, who facilitated many “copingwith FA” sessions for parents andchildren.The children had a tremendoustime. Camp Sunshine volunteerskept them occupied with one activityafter another, and the kids delightedin getting to know others like themselves,whether they were FA patientsor the siblings of FA patients. Parentsand children alike dressed up for theMasquerade Ball, all trooped downto the pond in the rain to sail their“wish boats”—with the fervent hopethat their wishes would come true—and the (quite talented!) childrenperformed at the talent show.The Family Meeting ended all toosoon, but families left buoyed by theexperience and rich with new friendships.◆Performing in the Talent Show.12 FA Family Newsletter