FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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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
The Frock kids dressed for the Masquerade Ball.Showing off their Wish Boats.Enjoying theFA Family MeetingThe Lauzier family ready for the Masquerade Ball.FA teens Zach Blecher, Amanda Gleason, and Amy Frohnmayer ready for the Ball.Fall 2004 13
Page 1 and 2: FA FAMILYNEWSLETTER#36 A Semi-annua
Page 3 and 4: Recurring Clonal Chromosomal Abnorm
Page 5 and 6: Ear and Hearing Problems in Fanconi
Page 7 and 8: Karly’s Storyby Nancy RossOur dau
Page 9 and 10: Our Experience with PGDby KatieWe
Page 11: The Long Journeyby Esmat and Rehman
Page 15 and 16: Why Our Family Decided To Raise Fun
Page 17 and 18: Family Fundraising EffortsFrom Janu
Page 19 and 20: Honoring the Beloved Memory ofOur F

FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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