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Annual Family Meeting

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The 2015 Family Meeting will be held June 25-July 1, 2015 at Camp Sunshine in Casco, Maine. The Family Meeting is a unique event that allows families registered with the Fanconi Anemia Research Fund (FARF) to attend presentations by researchers and physicians who are active in the research and treatment of Fanconi anemia (FA), to attend support groups for help in coping with the disease, to voluntarily participate in FA research projects, and to connect with other families affected by FA. Camp Sunshine volunteers provide a fun-filled program for children with FA and their siblings.

FARF and Camp Sunshine share in the expenses for this meeting; there is no cost to families as meals and lodging (1 room per family) are provided. Eligible families and adults with FA in need of financial assistance for travel expenses may contact Suzanne Planck (suzanne@fanconi.org) for information about travel assistance.

Tentative Topics for the 2015 Family Meeting

• Fanconi Anemia 101
• Overview and Updates of Research Opportunities Available during the Family Meeting
• Endocrine Issues: Growth and Development in Fanconi Anemia
• Gastrointestinal, Hepatic, and Nutritional Problems in Fanconi Anemia
• Head and Neck Cancer in Fanconi Anemia
• Detection of Oral Lesions in Transplanted vs. Non-transplanted Fanconi Anemia Patients
• Gynecologic Issues for Girls and Women with Fanconi Anemia
• Use of Androgens in Fanconi Anemia
• FA Stem Cell Transplant Panel (Protocols, Outcomes for FA Adults vs. Kids)
• Long Term Effects and Recommended Follow-Up after Stem Cell Transplantation
• Mind-Body-Spirit Techniques to Reduce Stress
• FA Teen and FA Adult Workshop (and Raffle)
• Fanconi Anemia Gene Therapy Trial
• FARF-Funded Research, Fanconi Anemia Clinical Trials, and Potential Treatments for Fanconi Anemia
• Open Forum: Ask FA Experts Science and Clinical Questions
• Fundraising for the Fanconi Anemia Research Fund
• Fundraising Workshop
• Support Groups (Daily)

 

Presentations from the 2014 Family Meeting are listed below:

Family Meeting Agenda

Fanconi Anemia 101
by Blanche P. Alter, MD, MPH, FAAP, National Cancer Institute, Rockville, MD

Endocrine Disorders in Fanconi Anemia
by Constantine Stratakis, MD, National Institute of Child Health and Human Development


Gastroenterology in Fanconi Anemia
by  Jose Garza, MD, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

Aldehydes: What are They and Why Should They be Avoided?
by Alan D’Andrea, MD, Dana-Farber Cancer Institute

Gynecologic Issues in Girls & Women with Fanconi Anemia
by Mercedes Castiel, MD, Memorial Sloan-Kettering Cancer Center, New York, NY<br />

Hearing and Ear Problems in Fanconi Anemia
by Chris Zalewski, MA, National Institute on Deafness and Other Communication Disorders

Oral Health Care for People with Fanconi Anemia
by Mark M. Schubert, DDS, MSD, Seattle Cancer Care Alliance

Teens & Adults with Fanconi Anemia: Facts and Tips for Oral Health
by Mark M. Schubert, DDS, MSD, Seattle Cancer Care Alliance

Hand Differences in Fanconi Anemia
by Scott Kozin, MD, Shriner's Hospital for Children in Philadelphia
Interview by Scott Kozin - Corrective Surgery: Index Pollicization

Factors Leading to Longevity in Fanconi Anemia, Detlev Schindler, MD, PhD, University of Wuerzburg, Wuerzburg, Germany:
Part 1
Part 2


Family Fundraising 2013
by Laura Hays, PhD, Executive Director, Fanconi Anemia Research Fund

Donating Tumor Tissue for Research
by Teresa Kennedy, Director of Family Support, Fanconi Anemia Research Fund


Bone Marrow Transplant Panel:


Clinical Trials Panel:

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