How it all started
One day, while I was working at Mount Sinai, Dr. Jeffrey Lipton asked me to do him a favor. He asked me to run a support group for families of children with Fanconi anemia (along with Drs. Blanche Alter and Arleen Auerbach). More than thirty-five years later, I now suspect that he unknowingly asked me for a lifetime commitment. That was in 1987.
Since that time, I have had the privilege of running groups, doing research, presenting, writing, and developing projects and programs for individuals with FA, their siblings, parents, and partners, at all the FA Family Meetings, all the Adult Meetings, and at regional FARF meetings. I’ve also been part of a Family Meeting in Denmark, virtual meetings in Australia and Norway, and FARF virtual events.
I introduced FARF to Camp Sunshine, bringing two organizations I was connected to together. For several decades, I have worked with the Master of Science Degree in Genetics Counseling program at Mount Sinai, inviting twelve students to the Family Meeting each year, where they have learned much more about what it is to live with FA than in a traditional classroom. More recently, I have engaged individuals with FA in mentoring Genetics Counseling students in several formats.
The path forward without Camp Sunshine
Although my relationship to Camp Sunshine changed in February, (2023), my professional path remains constant. Modelled on the efforts of clinicians and other researchers, I have made populations impacted by inherited bone marrow failures syndromes an ongoing commitment and it is my plan to spend more time in these pursuits. I am currently working on projects that involve individuals with FA, as well with other rare disease communities. I hope to launch a series of focus groups and engage in more psychosocial research and group work. It is my sense that individuals and families in all the inherited bone marrow failure groups can learn from each other, and it is my hope to create a forum to facilitate that communication.
Many of you also know that FA has become a prominent part of our household, with both my son, AJ Cincotta-Eichenfield growing up sharing his artistic talents and friendships with many people with FA, and my husband, Dr. Andrew Eichenfield serving as the onsite physician at the Family Meetings. We have all grown in this connection together and made FA a family affair.
I included a piece of one of the many art activities we have shared. You will find the “FA Skyline”(above), a favorite collaborative project with people with FA, the Mount Sinai Genetic Counseling class, AJ, and me. Each person with FA had a body tracing done, and then we photographed the tracings and created a unique FA landscape with them — a true work of FA-art!
Professional auspices may change, but our commitment to help those with FA and their families has only grown over the years. So, although we will not see you at Camp this summer, I am inspired by all the psychosocial pathways ahead. I look forward to the ongoing and new initiatives in which we will connect on the FA landscape, including partnerships with individuals with FA, their family members, and collaborative efforts with FARF and Drs. Lipton, Vlachos, and Shimamura.
I have had the distinct honor of watching many of you in the FA community grow up, embrace life, and deal with whatever FA brings. I will be back at the Adult Retreat and look forward to seeing you there. Whether I have met you in person, on Zoom, or have corresponded over email, let’s continue the dialogue; there is so much more to say! I am forever grateful that Dr. Lipton asked me for that favor.
With ongoing admiration for the Frohnmayers, Dr. Alter, and everyone who comprises the FA Community,
Nancy Cincotta, LCSW, MPhil