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Annual Family Meeting

The 2014 Family Meeting will be 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.

Interested families and adults with Fanconi anemia apply directly to Camp Sunshine to attend the meeting (click here for application). 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 Teresa Kennedy (teresa@fanconi.org) for information about travel assistance.

Tentative Topics for the 2014 Family Meeting

- Fanconi Anemia 101

- Overview and Update of FA Research Opportunities to Participate in at the Family Meeting

- FARF’s Partnership with Sage Bionetworks: The BRIDGE Project

- Hematologic Abnormalities in Fanconi Anemia

- Fanconi Anemia Stem Cell Transplantation Panel
  Center-Specific Data:  Number of FA Transplants, Outcomes for Kids vs. Adults, and Protocols:

  • Memorial Sloan-Kettering Cancer Center, New York, NY
  • Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
  • University of Minnesota, Amplatz Children’s Hospital, Minneapolis, MN 

- Long Term Follow-Up after Fanconi Anemia Stem Cell Transplantation

- Head and Neck Cancer in Fanconi Anemia: Risks, Prevention, Screenings, and Treatment Options

- Gynecologic Issues in Fanconi Anemia

- Dermatologic Issues in Fanconi Anemia

- Gastrointestinal, Hepatic, and Nutritional Challenges in Fanconi Anemia

- Techniques to get Picky Eaters to Eat

- Endocrine Issues in Fanconi Anemia

- The Role of Aldehydes in Fanconi Anemia

- Fanconi Anemia 101 Exclusively for Teens and Adults with FA (raffle included)

- Fundraising Overview and Recent Grants awarded by the Fanconi Anemia Research Fund

- Small Molecules as Targeted Therapeutics

- N-Acetyl Cysteine (NAC) and Update on the Fanconi Anemia NAC Clinical Trial

- Open Forum: Ask a FA Expert Your Final Questions

- Support Groups, Daily

 

Presentations from the 2013 Family Meeting are listed below:

Family Meeting Agenda

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

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:

of note

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Annual Family Meeting at Camp Sunshine, June 27 - July 2, 2014 learn more...

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