Annual Family Meeting

The 2014 Family Meeting was held June 27-July 2, 2014 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.

This year, 57 families from seven countries attended the meeting, including 65 individuals with FA, ages 1-24.

The 2015 Family Meeting dates will be announced in January 2015.

Presentations from the 2014 Family Meeting are listed below:

2014 Family Meeting Agenda

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

Head and Neck Cancer in Fanconi Anemia: Risks, Prevention, Screenings, and Treatment Options Video Presentation
David I. Kutler, MD, Weill Cornell Medical Center, New York, NY

You want me to eat what?: Improving Nutritional Behaviors Video Presentation
Susana R. Patton, PhD, CDE, University of Kansas Medical Center, Kansas City, KS

Potential Treatments for Fanconi Anemia Video Presentation
Richard Gelinas, PhD, Institute for Systems Biology, Seattle, WA

N-Acetyl Cysteine (NAC) and Update on the Fanconi Anemia NAC Clinical Trial
Rabindra Tirouvanziam, PhD, Emory + Children’s Center for Cystic Fibrosis Research, Atlanta, GA

Long Term Follow-Up after Fanconi Anemia Stem Cell Transplantation
Farid Boulad, MD, Memorial Sloan-Kettering Cancer Center, New York, NY

A multicenter trial of BMT for patients with Fanconi Anemia
Farid Boulad, MD, Memorial Sloan-Kettering Cancer Center, New York, NY

Risk-Adapted Radiation-Free Transplant For Fanconi Anemia/Quercetin Clinical Trial
Stella Davies, MBBS, PhD, MRCP, Cincinnati Children’s Hospital, Cincinnati, OH

Fundraising Overview and Recent Grants Awarded by the Fanconi Anemia Research Fund
Laura Hays, PhD, Executive Director, Fanconi Anemia Research Fund, Eugene, OR

Gene Therapy for Fanconi Anemia
Jennifer Adair, PhD, Fred Hutchinson Cancer Research Center, Seattle, WA

Endocrine Issues in Fanconi Anemia
Susan R. Rose, MD, MEd, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

Gastrointestinal, Hepatic, and Nutritional Challenges in Fanconi Anemia
Sarah Jane Schwarzenberg, MD, University of Minnesota, Minneapolis, MN

Donating Tumor Tissue for Research

of note

$25 for 25 years. In honor of the our 25th year, please consider donating to the Fund. learn more...

Four video presentations from the 2014 Family Meeting are available now. learn more...

Fanconi Anemia Scientific Symposium, September 18-21 learn more...

Seattle gene therapy clinical trial opens to children 4 years and older learn more...