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Annual Family Meeting

The Family Meeting is a unique event that allows families registered with FARF to attend presentations by scientists and physicians who are active in the research and treatment of FA, to attend support groups, 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.

The dates for the 2015 Family Meeting at Camp Sunshine are: June 25-July 1 for new families only and June 26-July 1 for returning families. Camp Sunshine’s application is available by clicking the following link: 2015 Family Meeting Application.

Families must apply directly to Camp Sunshine to attend the Family Meeting. Outside of transportation, there is no cost to attend the Family Meeting, as FARF and Camp Sunshine share in the expenses for this meeting (meals and lodging, 1 room per family, are provided).  Families and adults with FA should return fully completed applications to Camp Sunshine by March 2 to ensure that they will hear from Camp Sunshine regarding acceptance on or before April 14.

Eligible families and adults with FA in need of financial assistance for travel expenses may contact Teresa Kennedy for a scholarship application for travel assistance.

2015 Family Meeting Tentative Presentation Topics

In 2014, 57 families from seven countries attended the meeting, including 65 individuals with FA, ages 1-24. Presentations from the 2014 Family Meeting are below:

2014 Family Meeting Agenda

Fanconi Anemia 101:
- Video Presentation
- PowerPoint 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
 - PowerPoint Presentation
David I. Kutler, MD, Weill Cornell Medical Center, New York, NY

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

Potential Treatments for Fanconi Anemia:
  - Video Presentation
  - PowerPoint 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
Endocrine Phenotype of Children and Adults With Fanconi Anemia

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

Donating Tumor Tissue for Research

of note

The new Guidelines for Diagnosis and Management are now available!! learn more...

The Annual Family Meeting dates have been announced. learn more...

Save the Date: Fanconi Anemia Scientific Symposium September 17-20, Toronto, Canada learn more...