FA Family Newsletter - Fanconi Anemia Research Fund

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Fanconi Anemia Research Pioneer RetiresNews From the FundHans Joenje, PhD, apioneer in Fanconi anemiaresearch and former memberof the Fanconi AnemiaResearch Fund’s ScientificAdvisory Board, has retired.Dr. Joenje, the only personever to receive both theFund’s Award of Merit andthe Distinguished ServiceAward, made exceptionallysignificant contributions to the field of FA research,including participating in the discovery of 12 FA genes,which helped to provide the foundation for current FAscience. His research remains integral to the study of FA.Early in Dr. Joenje’s career, he made the groundbreakingdiscovery that the chromosomal breakage in FA dependson atmospheric oxygen. He has continued to work onFA and the genetic toxicology of oxygen ever since. WhenDr. Joenje began studying FA, little was known about therare disorder and none of the genes responsible for FA hadbeen identified. In 1992, Dr. Joenje was instrumental informing a European consortium to clarify the genetic basisof FA. Fifteen FA genes have now been discovered.In addition to his work in the laboratory, the Fundrecognizes Dr. Joenje for his dedicated service to familiesaffected by Fanconi anemia. He has attended the Fund’sannual FA Family Meeting to present information tofamilies about the scientific basis of FA and has workedtirelessly with families to help them determine theirparticular FA gene.Dr. Joenje spoke in March 2011 at a symposiumorganized at the Vrije Universiteit in Amsterdam, TheNetherlands, to honor him for his work in Fanconianemia research. Dave Frohnmayer participated byvideo, and thanked Dr. Joenje on behalf of FARFand FA families worldwide for his innovative work.Although retired and looking forward to spending moretime in his garden and with his beloved dachshund, Dr.Joenje has promised to remain actively involved in theFA community.We thank Dr. Joenje for his tremendous contributionto the field of FA research and wish him well in hisactive retirement.Welcome Dr. William to theFund’s Scientific Advisory BoardWilliam N. William, Jr.,MD, a medical oncologistfrom The University ofTexas MD AndersonCancer Center in Houston,accepted an appointmentin April to serve a threeyearterm on the FanconiAnemia Research Fund’sScientific Advisory Board.Dr. William is an assistantprofessor in the Department of Thoracic/Head andNeck Medical Oncology, Division of Cancer Medicineat MD Anderson, a position he has held since 2006.Dr. William came to the US from Brazil for a postdoctoraland then a clinical fellowship. He received hismedical degree in 2001, graduating from the Faculdadede Medicina da Universidade de São Paulo, Brazil. Dr.William has co-authored dozens of articles related tohead and neck cancer and has won several prestigiousawards, including the American Society of ClinicalOncology Cancer Foundations’ Young InvestigatorAward in 2009.Dr. William joins a group of distinguished researchersand clinicians on the Scientific Advisory Board.Members of this board (listed on the back cover of thisnewsletter) guide the Fund’s research priorities, advocateon behalf of FA at national and international meetings,and provide guidance and support to the staff and boardof the Fund. We welcome Dr. William and are honoredto have him join the FARF team!22 Family Newsletter #50
Researchers and Clinicians to Convene inBarcelona for 23rd Annual Scientific SymposiumScientific SympOSiumOctober 20-23, 2011Princesa Sofia HotelBarcelona, SpainSAVE THE DATE • Watch for a Call for Abstracts in MarchThe Fanconi Anemia Research Fund’s 23 rd annual Scientific Symposium, to be held thismonth in Barcelona, promises to be our “most exciting” symposium, according to Grover23rd ANNUALFanconi Bagby, Anemia MD, Research Fund chair of our Scientific Advisory Board. Dr. Bagby’s excitement is heightened by therapidly evolving body of FA science to be shared by the more than 270 researchers and cliniciansexpected in Spain. Topics of special sessions include gene therapy, induced pluripotent stemcells, the role of the human papillomavirus in squamous cell carcinoma, and novel drug agents.Look for the April 2012 issue of the FA Family Newsletter for a full recap of the symposium.Head and Neck Cancer Experts Will Meet in 2012To Continue Discussion on FASquamous cell carcinoma (SCC), particularly of thehead and neck, poses a significant risk to people withFanconi anemia and remains a top priority for the Fund.The Fund’s third meeting devoted to SCC in FA patientswas held in April 2010. A follow-up meeting, scheduledfor March 2012, is expected to move the discussionforward, with a focus on prevention, diagnosis andtreatment. In addition, several exciting grant applicationsexploring various aspects of this insidious disease in FApatients are currently under review. Stay tuned for futureupdates.News From the FundUpcoming EventsContact Pauline Thaler, Project Coordinatorat the Fund, at pauline@fanconi.org with detailsof upcoming fundraising events. We will includeyour information on the Fundraising EventsCalendar on our website.Help Advance FA Research!FA researchers are working hard to find effectivetreatments and a cure for Fanconi anemia, butthey can’t do it alone. FA researchers need you.Please consider donating research material.For more information, contact:Teresa Kennedy, Fanconi Anemia Research Fund, Inc.Phone: 541-687- 4658 or Email: teresa@fanconi.orgWorking together to advance FA research.Visit Our NewFA MarketplaceThe Fanconi Anemia Research Fund is pleasedto announce a new feature on our website—theFA Marketplace. The FA Marketplace is a pagefeaturing items for sale by families affected byFA and a central location where friends, familiesand donors can purchase items that benefit theFund. One hundred percent of the net proceedsare donated to the Fund for FA research andfamily support.Visit www.fanconi.org, click on the “fundraising”button and shop in the FA Marketplace. Each FAfamily “shopkeeper” handles his or her own sales.If you currently sell items and donate the netproceeds to the Fund, and would like to be apart of the FA Marketplace, please email PaulineThaler, Project Coordinator for the Fund, atpauline@fanconi.org.Family Newsletter #50 23
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 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: Door to Door SuccessJack Timperley,

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