News & Events
Canadian FOP Family Conference |
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Date: Thursday, June 12 and Friday, June 13, 2025
Location: Toronto
Registration: Coming soon!
Join us for this in-person Canadian FOP Family Meeting where we will meet our FOP medical experts located in Canada, including:
Information on Clinical Trials will be presented along with presentations from pharmaceutical companies such as Ipsen, Regeneron, Incyte, etc.
A detailed agenda will be released prior to the event.
Location: Toronto
Registration: Coming soon!
Join us for this in-person Canadian FOP Family Meeting where we will meet our FOP medical experts located in Canada, including:
- Dr. Angela Cheung, Toronto University Health
- Dr Peter Kannu, University of Alberta
- Dr. Clive Friedman, Board Certified Dentist, London, Ontario
- Dr. Christiaan Scott, University of Ottawa
Information on Clinical Trials will be presented along with presentations from pharmaceutical companies such as Ipsen, Regeneron, Incyte, etc.
A detailed agenda will be released prior to the event.
Health Canada approves Ipsen’s Sohonos (palovarotene capsules) as the first approved treatment for fibrodysplasia ossificans progressiva
On Jan 24, 2022, Ipsen announced the Canada approval of Sohonos (palovarotene capsules). Indicated to reduce new bone formation in adults and children (8 years and above for females and 10 years and above for males) with FOP. Sohonos is approved for both chronic use, and for flare-ups. It is the first approval for Sohonos worldwide.
Sohonos is an oral, selective RARγ agonist developed as a treatment for people living with this debilitating ultra-rare genetic disorder. The treatment was acquired by Ipsen through the acquisition of Clementia Pharmaceuticals.
Sohonos is an oral, selective RARγ agonist developed as a treatment for people living with this debilitating ultra-rare genetic disorder. The treatment was acquired by Ipsen through the acquisition of Clementia Pharmaceuticals.
Sparked Speed Dating Fundraiser (written by Marin Wallace)
On April 25, the social event organization Socielite hosted a speed-dating night, with proceeds going to the Canadian FOP Network. Given the very high odds that no one there had heard of FOP (“Isn’t that a conceited Englishman?”), I went to offer them a brief explanation.
I was given approximately 6 minutes to inform the guests about the disease (which is barely enough time for a brief definition, really). In that time, I chose to describe the horrid pain and effects of a flare-up, lay out the process in which FOP typically fuses the joints, and explain where their much-needed donations would go.
After my talk, I stayed for the event and answered any questions people had. And participated in the speed-dating activities. (No, the love of my life was not there.)
Many attendees were very curious and, if nothing else, the event introduced a lot of people to the disease. Plus, one of these people was a doctor, so there is now one more doctor in Toronto who knows what FOP is. (Do you ever stop to wonder what percentage of aware doctors have been introduced to FOP by someone who has the disease?)
Sparked raised $500 for CFOPN and increased awareness in the GTA. In my mind, this makes it a very successful event.
I was given approximately 6 minutes to inform the guests about the disease (which is barely enough time for a brief definition, really). In that time, I chose to describe the horrid pain and effects of a flare-up, lay out the process in which FOP typically fuses the joints, and explain where their much-needed donations would go.
After my talk, I stayed for the event and answered any questions people had. And participated in the speed-dating activities. (No, the love of my life was not there.)
Many attendees were very curious and, if nothing else, the event introduced a lot of people to the disease. Plus, one of these people was a doctor, so there is now one more doctor in Toronto who knows what FOP is. (Do you ever stop to wonder what percentage of aware doctors have been introduced to FOP by someone who has the disease?)
Sparked raised $500 for CFOPN and increased awareness in the GTA. In my mind, this makes it a very successful event.
Stem Cells Used to Model Disease that Causes Abnormal Bone Growth
UCSF-Led Study Sheds Light on Muscle-to-Bone Transformation - (January 2014) Researchers have developed a new way to study bone disorders and bone growth, using stem cells from patients afflicted with a rare, genetic bone disease. The approach, based on Nobel-Prize winning techniques, could illuminate the illness, in which muscles and tendons progressively turn into bone, and addresses the similar destructive process that afflicts a growing number of veterans who have suffered blast injuries — including traumatic amputations or injuries to the brain and nervous system. This insidious hardening of tissues also grips some patients following joint replacement or severe bone injuries.
Defense Department Funds Research on Rogue Bone Growth
Dr. Jeffrey Gimble, adjunct professor in Tulane University’s Center for Stem Cell Research and Regenerative Medicine, is studying the causes of heterotopic ossification. (September 2013)
22nd Annual Report of the FOP Collaborative Research Project
Read the most recent information from Drs. Kaplan, Pignolo and Shore including research highlights, future plans, talk about drug trials and more.
Canadian FOP Conference - May 31 & June 1, 2013
CFOPN hosted the 2nd Canadian FOP Conference on the weekend of May 31/June 1, 2013 at Thames Valley Children's Centre, London, Ontario. The event was a huge success with 5 presenters from Philadelphia, a local paediatric dentist and a family panel. A full write-up of the highlights will be available soon.
