Meetings for Adults with FA

The Fanconi Anemia Research Fund is conducting a brief survey for adults with Fanconi anemia about our family support meetings.  We value your input and would appreciate your participation in the survey. The results will help guide us as we plan future meetings. Please click on the link below to proceed with the survey.

Survey for Adults with Fanconi Anemia
Please complete by November 3, 2014

In March 2014, 42 adults with Fanconi anemia attended the Meeting for Adults with FA, held in Baltimore, Maryland. For 55% of the attendees, this was their first Meeting for Adults with FA. This is the largest gathering of FA adults at one time and certainly a new record for the Fanconi Anemia Research Fund. The participants ranged in ages 18-61 (with the average age of 31) and came from the following countries: United States, Canada, Australia, Columbia, Denmark, Dominican Republic, Germany, Israel, South Africa, Netherlands, and the United Kingdom. Participants heard from FA-specialists about: Fanconi Anemia 101, Personal Relationships: Genetics and Fertility, Aldehydes,  Empowering Wellness with Dynamic Food Therapy, Head and Neck Squamous Cell Carcinoma in Fanconi Anemia, and Gynecologic Considerations for Women with Fanconi Anemia. Some of the presentations are available below and summaries of the presentations will be published in the 2014 Fall FA Family Newsletter, issue #55. Attendees also participated in up to four FA research projects available during the meeting.

Participants described the meeting as “inspiring, hopeful, powerful, and not to be missed.” In addition, one participant said, “This was absolutely the most hopeful Fanconi anemia meeting” that she had ever attended.

Attendees expressed deep gratitude towards our donors and the people who fundraise, making this meeting possible. Planning for the next Meeting for Adults with FA is underway.

2014 Meeting Agenda

To view PowerPoint presentations from the 2014 Adults with FA Meeting, please follow the links below:
(Please note that some of the files are quite large and may take a few moments to load.)

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

Empowering Wellness with Dynamic Food Therapy
by Christine Dionese L.Ac MSTOM, Co-Founder, Garden Eats, San Diego, CA

Aldehydes: What Are They and Why Should They be Avoided?
by Kalindi Parmar, PhD, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA

Gynecological Issues Facing Female Fanconi Anemia Patients
Part 1
Part 2
Part 3
by Pamela Stratton, MD, Head, Gynecology Consult Service Program in Reproductive and Adult Endocrinology Eunice Kennedy Shriver NICHD, NIH

Personal Relationships: Genetics and Fertility
by Heather Zierhut, MS, CGC, PhD, University of Minnesota, Minneapolis, MN

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...