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Forwarding Progress on Eating Disorder Genetics

Charlotte Bevan In Memorium Retired Board Member F.E.A.S.T. 2013 Magic Plate Award Recipient Charlotte's Helix

I’ve been waiting for this day for 15 years. But, I only knew it was real when my friends and family started forwarding the articles to me:

Scientists have found that anorexia is linked to metabolism

In 2002, when our family met up with and faced down this diagnosis, I dreamed of THIS day. I remember Googling to find it, sure it was already there. Now, no family will wonder.

What those surprised and interested friends and family wouldn’t know is that the real information came in language and vocabulary that isn’t quite as quotable:

Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa

And they also won’t know, as I do, the scientists quoted in those articles. What may seem like distant and unapproachable researchers are people I know, have been happy to support, and have been proud to call colleagues over the years. Including F.E.A.S.T. Advisor, Dr. Cynthia Bulik., a pioneer, leader, and hero of eating disorders research.

Including Dr. Gerome Breen, with whom I and Erica Husain and others in the parent community collaborated on Charlotte’s Helix, the groundbreaking genomics project in the UK founded by myself and Charlotte Bevan, legendary parent activist.

I know the passion and the challenges and the dogged persistence of those who made this happen. I know the countless generous families and affected individuals who have signed up for the studies. I know the twists and turns of funding and permissions and embargos and professional jostling.

But what impresses me most today, this morning as my messages pile up, is that the families who will benefit from this new science will be getting those forwarded emails and messages today and from now on. Instead of shaming, blaming, and ignorant myths, families new to the diagnosis are getting useful messages in their inboxes. Messages that point to biological and treatable disorders. Messages that confirm what families have been saying for a long time: “It is not your fault, we understand how hard this is, food is medicine, we are going to be with you and get you to the other side, together.”

Science is hard to explain. But the forwards and the “have you heard” is the step forward that science in the field needed.

Treatable disorders. Genetics. Food is medicine. Family as allies, not distractions. These have been F.E.A.S.T’s foundational beliefs from the beginning. As of today, I think a lot more people are going to start from a different place: hope.

Welcome: we’ve been waiting for you.


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