We’re excited about London!

Posted by Karen - May 7th, 2017

Guess what’s coming up… It’s the Canadian FOP Network family conference. Woo hoo! The CFOPN conference only comes up once every 3 or 4 years, and when it does, it’s EPIC! ;-) This year promises to be the best ever – we’ve got a packed agenda set. (I say “we” as I am a board member of the CFOPN.)

The 2017 version of this event will be Friday, June 16 and Saturday, June 17, and as before, it will be at the Thames Valley Children’s Centre (a rehab facility where our board chair, Carrie Connell, happens to be employed). It all starts off on Friday with medical clinics by two physicians with a great deal of knowledge about Fibrodysplasia Ossificans Progressiva – Dr. Fred Kaplan and Dr. Bob Pignolo. These two eminently qualified doctors will be conducting a series of patient exams on Friday, which is a great opportunity for FOP patients to be examined by these doctors and receive the latest and most up-to-date advice about FOP. The CFOPN is giving priority to Canadian patients for these exams, but they are absolutely not limited to Canadians. As long as there’s time, we’re happy to schedule in folks who’ve, say, driven north a few hours from the United States, or even flown in from far away places – at our last two conferences we had Americans but also one patient all the way from the Netherlands (plus a family from Ukraine, though they didn’t bring the FOP person along).

Dr. Grunwalld, me, Miranda, Dr. Pignolo and Dr. Kaplan (getting a scalp massage from Miranda, LOL).

Dr. Grunwald, me, Miranda, Dr. Pignolo and Dr. Kaplan (getting a scalp massage from Miranda, LOL), at the last CFOPN convernece a few years ago.

In any event, the patient clinics will be followed by an informal reception on Friday night, and then on Saturday, the really interesting stuff begins. How interesting, you ask? Well, we’ve got the following presenters lined up:

– Dr. Eileen Shore, PhD, of the University of Pennsylvania FOP research centre, on the importance of preclinical studies

– Dr. Robert Pignolo, MD, PhD, of the Mayo Clinic, on joint functioning in FOP

– Dr. Toshifumi Yokota, PhD, of the University of Alberta (yes, a Canadian researcher!), on targeting RNA to treat FOP

– Dr. Fred Kaplan, MD, of the University of Pennsylvania FOP research centre, on the FOP skeleton

– Adam Sherman of the International FOP Association, on the FOP patient registry

– Dr. Donna Rogan, MD, of Clementia Pharmaceuticals, on Clementia’s development of Palovarotene to potentially treat FOP

– Stephanie Hoffman, of Clementia Pharmaceuticals, on their FOP narrative project

– Dr. Sarah Hatsell, MD, of Regeneron Pharmaceuticals, on Activin A and how it relates to FOP treatment

– D. Xiaobing Qian, MD, of Regneron Pharmaceuticals, on Regeneron’s development of an Activin A antibody to potentially treat FOP

As you can see, this is an AMAZING panel of experts. Never before has CFOPN had so many vitally important speakers present at a conference (because never before has FOP research been this dynamic and diverse). I really think we are going to learn some truly incredible stuff from these presenters, and I’m so looking forward to it all.

But, of course it’s not just about the research. The CFOPN conference is always a great opportunity for Canadian FOP patients (and other FOP patients) and their families to get together, have fun, share common experiences, and generally bond. We do that throughout the conference, of course, and the final closing dinner on Saturday night is a great last opportunity for us all to be together and have a wonderful time.

I understand people started registering for the conference right away, pretty much as soon as it was possible to do so. By the time I got organized to book our flights and hotel rooms, the day after registration opened, the reserved suite of hotel rooms was already down to just a few rooms left (of course, conference attendees are free to stay at any hotel or wherever they wish).

If you’d like more information about this conference, go to the website of the CFOPN at www.cfopn.org.

Hooray for the CFOPN conference! We can hardly wait.

Miranda and me, looking forward to June!

Miranda and me, looking forward to June!

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