A Unified Approach
The recent first annual Fibrodysplasia Ossificans Progressiva (FOP) and Traumatic Heterotopic Ossification (HO) Symposium at Michigan Medicine brought together scientists, clinicians, and families from these two devastating and complex diseases to explore how they overlap. HO or Heterotopic Ossification is a life-altering process from which people suffer after injury or with specific genetic disposition called Fibrodysplasia Ossificans Progressiva (FOP). In this process, patients develop bone in skeletal muscle, tendons, and connective tissues causing chronic pain, joint contractures, and limited mobility.
Previous symposiums either focused on FOP alone or Traumatic HO alone, but none had brought these two groups together. Dr. Benjamin Levi, with the help of Michelle Davis and Adam Sherman from the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), began to discuss this last year at the IFOPA Drug Development Forum and felt this would add a unique angle to research and scientific advancement. FOP and Traumatic HO both cause severe and depleting joint contractures, chronic pain, limited mobility, and the constant need to adjust the activities of daily living. Patients with FOP have this problem, for which there is no treatment or cure (not even surgery) that occurs progressively. Similarly, in Traumatic HO, there are no preventative strategies available. Though for Traumatic HO patients, surgery can offer some relief, results are sub-optimal and recurrence is common.
Recent advances in the field of FOP have improved our understanding of both the progenitor cell population and inflammatory cell populations that are responsible for Heterotopic Ossification. Several speakers from both sides of HO and FOP research, spoke eloquently about how these improvements have and continue to lead to improved patient care. In addition to bringing scientist and clinicians to together, a big goal of the meeting was to bring together patients with both of these processes. Since FOP only occurs in approximately 1 in 2 million patients, they may not otherwise know of other Traumatic HO patients, despite it being common in over 20 percent of patients with hip replacement, traumatic spinal cord injury, burns and extremity trauma.
The patient panel was absolutely the highlight of the meeting, where we had members of the FOP community including Sienna Otto and her mom Rory, Nancy Sando and her caregivers, Ian Brodie and his parents, and Natalie McGuire and her brother Keegan and her dad Gary. They spoke to the challenges of living with FOP and what they feel are the pressing needs, giving clinicians and scientists areas to focus their research efforts. Similarly, we had outstanding conversations with and inspiration from our Traumatic HO patients, Nick Koulchar from Brighton, State? who had bilateral lower extremity Heterotopic Ossification and Marc Fucarile from Boston who also had lower extremity Heterotopic Ossification. Their current dedication to helping others who suffer from limb loss and participation in frequent hand cycle races, was a true inspiration to everyone in the audience. Several members mentioned that as scientists, they don’t get to meet the patients they are trying to help often enough and that they were excited to go back to the lab after hearing these inspirational talks.
Overall, this was an extremely successful event, where the goal was unifying FOP and Traumatic HO scientists and families to advance research toward treatments and a cure for both of these processes. We were lucky to host an impressive array of scientists and surgeon scientists from across the country with a wide variety of backgrounds who all gave informational, inspirational, and focused talks. These talks led to important conversations that we believe will improve the care of our patients in the future. Given the unique set of problems that face these patients and the complex science behind them, we felt bringing a diverse group together was the ideal way to improve their patient care in hopes of discovering a cure.
Article by Benjamin Levi, MD