Merritt Engel

  • published Careers in ABOUT IFOPA 2020-12-22 15:46:09 -0500


    Our mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide.  

    The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is an international nonprofit organization fostering medical research and providing education and support for those afflicted by the rare genetic condition fibrodysplasia ossificans progressiva (FOP). A volunteer board of directors governs the IFOPA. We hold ourselves accountable to the FOP community. As an organization, we work closely with patients and families, national FOP organizations around the world, and leading clinicians, scientists and drug developers.

    We are currently hiring a Research Development & Partnerships Director.

    Title: Research Development & Partnerships Director

    Location: United States 

    Description of Research Activities: The gene responsible for FOP was discovered in 2006. Since that time, there have been major advances in the search for treatments and a cure for FOP. In 2014, the IFOPA hosted its first FOP Drug Development Forum and in 2015 launched the only FOP Registry in the world. Also in 2015, the IFOPA launched a competitive research grant program – Accelerating Cures & Treatments (ACT) for FOP. In 2017, the IFOPA created a full-time staff position, Director of Research Development & Partnerships, to fully develop its research strategy. Since that time, a variety of research infrastructure tools have been developed and are owned by the IFOPA – FOP Mouse Model, FOP Biobank and Preclinical Drug Testing Program. The IFOPA recently led an FOP Prevalence Study which will soon be published. In addition to the ACT for FOP Grant Program, in 2018 the IFOPA began funding FOP grants through the Penn Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program and in 2020 funded the first-ever FOP gene therapy grant. In addition to biennial FOP Drug Development Forums, the IFOPA has also convened a Biomarker Consortium, Immunology Working Group and Gene Therapy Working Group. It is a very exciting time in FOP research. View a list of current FOP studies and trials.

    Position Overview: The IFOPA’s Research Director is responsible for the development and management of the IFOPA’s research strategy which includes: administering FOP research grants; managing research tools and infrastructure; convening scientific meetings; developing and maintaining relationships with academic, clinical and industry partners; and communicating research and clinical studies & trials news with FOP families. Partnering with the Research Director and the IFOPA’s Research Committee, ACT for FOP Scientific Advisory Board, FOP Registry Medical Advisory Board and IFOPA Executive Director. This position supervises the FOP Registry Project Manager.  

    Hours, Supervision and the IFOPA Office: This full-time position reports to the IFOPA’s Executive Director. All IFOPA staff members work remotely from their homes. 

    Position Responsibilities: 

    • Provide management oversight for the FOP Registry and the FOP Registry Project Manager, work with the Registry Medical Advisory Board to develop Registry publications and connect the Registry to the rest of the IFOPA’s research programs and activities.
    • Design the agenda and all scientific content for the biennial FOP Drug Development Forum. Work with research partners to convene additional scientific meetings.
    • Develop the request for proposal and promote the IFOPA’s competitive research grants program. Work with the IFOPA’s Scientific Advisory Board for blind review, scoring and selection of grantees.
    • Structure, administer and monitor contractual agreements, including reporting, for the IFOPA’s research grants portfolio.
    • Manage relationships with both academic researchers and industry interested in FOP research.
    • Guide strategic implementation and evolution of the IFOPA’s research tools and infrastructure, which includes managing program operations (e.g. contract negotiations, vendor management) and ensuring output to the community (e.g. reports and publications). Investigate additional research tool offerings.
    • Work with the Executive Director to solicit sponsorship and grant support for IFOPA-led research initiatives.
    • Work with the Executive Director and Family Services Manager to develop educational resources on clinical studies and trials and IFOPA research programs, including, but not limited to, website content, videos, webinars, podcasts and print materials.
    • Represent the IFOPA to external audiences for information sharing and publicity regarding the organization’s research and drug development programs.
    • Partner with the Research Committee Chair to develop the agenda, supporting materials and minutes for meetings. Disseminate relevant information to other staff members and the Board.

    Position Qualifications: 

    • Graduate degree in a life sciences discipline preferred
    • Experience working in the industry to advance drug programs or in a nonprofit in a scientific capacity; rare disease experience preferred
    • Experience working on collaborations with industry, academic labs and nonprofits; experience managing the collaborations preferred
    • Experience reviewing funding proposals and allocating grants preferred
    • Experience with patient registries preferred
    • Experience supporting preclinical or clinical-stage research focused on muscle and bone disease preferred; additional experience in rheumatology a plus
    • Comfortable working in a virtual environment. Travel (when possible post-COVID) will be required several times throughout the year, including some international travel
    • Excellent communication and interpersonal skills

    The IFOPA is committed to creating a diverse environment and is proud to be an equal employment opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age or veteran status, as well as any other category protected by federal, state or local laws.
    The position requirements may change when necessary or as needed. This position description does not state nor imply that these are the only duties to be performed by the jobholder. Essential elements may change when necessary.
    To apply, please send your resume along with a cover letter and salary requirements to Michelle Davis, Executive Director.

  • published Oral Health and Dentistry in Ability Toolbox Program 2020-11-23 11:49:06 -0500

    Dental Care

    Emergency Dentistry Contacts

    Corrie J. Crowe, DDS
    (856) 258-4025

    Robert J. Diecidue, DMD, MD (Oral & Maxillofacial Surgery/Dentistry)
    Thomas Jefferson Hospital
    (215) 955-6215

    Clive Friedman, DDS, FAAPD
    Pediatric Oral Health & Dentistry
    (519) 679-9860 (office)
    (519) 657-6014 (cell)

    Read the guidelines for preventative oral healthcare, orthodontics & FOP, submandibular flare-ups and dental anesthesia on pages 68-75 of The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations

    Oral Health Care and It's Impact on the Person's Overall Well-being Webinar 

    FOP dental expert Dr. Clive Friedman and Family Services Coordinator Karen Kirchhoff presented to the FOP community about the importance of oral health and it's impact on the overall well-being of the individual. They answered questions from the community, reviewed recommendations for FOP specific dental care and highlighted valuable dental products and tools you can use to assist with you oral health care needs.

    Click here to access presentation slides

    Travel Stipend Program for Dental Care

    Funding for transportation and lodging is available for eligible families who are financially burdened by traveling away from their home for dental care that can best be completed by an FOP dental expert at Jefferson University Hospitals in Philadelphia, Pennsylvania.

    Learn More and Apply Here

  • published Midnight Sun Color Run 2020 2020-08-14 17:00:39 -0400

  • published Dental Care Travel Stipend in Oral Health and Dentistry 2020-07-21 10:02:01 -0400

    Dental Care Travel Stipend

    Travel Stipend Program for Dental Care

    Funding for transportation and lodging is available for eligible families who are financially burdened by traveling away from their home for dental care that can best be completed by an FOP dental expert at Jefferson University Hospitals in Philadelphia, Pennsylvania.

    How to apply:

    Applications must be submitted by an individual with FOP or their caregiver. Please review the guidelines below before applying.

    For questions and extenuating circumstances, please reach out to Family Services directly at or +1 785-294-1607.

    Apply Now

    Criteria to be met:

    • Child or adult must have a confirmed FOP diagnosis
    • Patient must have a scheduled dental procedure date at Jefferson University Hospitals
    • Applications must be completed entirely; missing information will result in a denial

    Things to know before applying:

    • Expenses must be submitted for reimbursement within 30 days from the date of the procedure. Reimbursements will not be processed until after the date of procedure.
    • At this time, assistance is only available for travel to receive dental care at Jefferson University Hospitals.
    • The IFOPA provides up to $1,500 to cover travel and lodging assistance, as long as all eligibility criteria are met.
    • Travel assistance is intended for the patient and one caregiver to get to treatment.
    • Applicants may request for the IFOPA to pay airfare and hotel charges directly or request reimbursements after the surgery date.
    • Please provide as much lead time on travel dates as possible.
    • You can expect to hear back from us regarding your application within 2 business days.

    Lodging Requests

    • Lodging reimbursement may be applied to all nights that the family is required to stay in Philadelphia for follow-up appointments immediately following the dental procedure.
    • Lodging will be reimbursed up to $150/night
    • Recommendations for lodging near Jefferson Hospitals:
      • DoubleTree Hilton - Address: 237 South Broad Street, Philadelphia, PA 19107 Phone: +1 215-893-1600
      • Best Western Hotel - Address: 235 Chestnut St, Philadelphia, PA 19106 Phone: +1 215-922-4443
    • Charity lodging (such as Ronald McDonald House) must be accessed first for children under the age of 18, unless there are mitigating circumstances. (Please note: The IFOPA does not cover donations to Ronald McDonald House per their website’s statement: “The RMHC Global Policy is that families are never turned away; if it’s not possible to pay, the fee is waived.”). We prefer that all families with children under the age of 18 apply directly to Ronald McDonald House for charity lodging. If this option is not feasible for your child due to health concerns, please note that in your application.
    • If the applicant requests the IFOPA pay the vendor directly, one of the two recommendations for lodging listed above will be used.

    Airfare Requests

    • If necessary, the IFOPA may book airfare, train or bus travel for the patient and one caregiver.
    • Please be sure to indicate in your application if there are special accommodations needed for the patient while traveling (i.e. accessible transportation, wheelchair assistance, etc).

    Mileage  Requests

    • Mileage assistance is approved based solely on mileage for driving the patient to/from the hospital
    • Mileage is reimbursed at the IRS standard mileage reimbursement rate for 2020 which is 57 cents/mile


    • You may choose to reimburse only for gas (with receipts)

    Apply Now


  • published Virtual Events in Fundraising Ideas 2020-07-07 15:40:33 -0400

    Virtual Events

    As the FOP community and the world adjust to the unexpected changes COVID-19 has brought, it has been necessary for the IFOPA to cancel or postpone a few fundraising events in order to ensure the safety of our family, friends and communities. The COVID-19 crisis underscores the need for the IFOPA's education and support programs for families and the need to press forward with research to develop treatments and a cure for FOP. Fundraising, even during these challenging times, must continue. Here are some ways you can fundraise to help #cureFOP even during social distancing:

    • Host a Facebook fundraiser. Facebook fundraisers are a quick, easy and effective way to fundraise to help #cureFOP. If you need help setting up a fundraiser on Facebook, visit or contact Cathryn Roys, Community Fundraising Manager.

    • Share your personal fundraising page or share with family and friends, tell them about your journey with FOP and ask for their support. Check out the IFOPA’s new personal fundraising pages. If you don’t have a personal fundraising page, contact Cathryn.

    • Host a T-shirt fundraiser. There are several great t-shirt companies that ship directly to your supporters and you can share the campaign online through your social media. Contact Cathryn to use one of the IFOPA logos or to have a custom logo created for your campaign.

    • Host a virtual event!
      • New event – You can host a fun and creative, but socially distanced, event that’s engaging for your friends and family while raising money to help #cureFOP! A few examples are:
        • Online auction
        • Online gala/cocktail party/wine tasting/karaoke night
        • Online video game tournament
        • Golf tournament (each player with their own golf cart)
        • Virtual 5K/bike ride
        • Online trivia night
      • Existing event – If you can’t host your planned event in-person, you can move it to a virtual platform. If it doesn’t make sense to host your event online, you can still get the message to your supporters that our mission remains as critical as ever and ask for donations.

    ­­­­­­­­­­­­­­­­­­­­­­­­­Contact Cathryn for help in planning your virtual event.





  • published Immune Boosting Series in Energy Medicine 2020-06-29 14:52:34 -0400

    Immune Boosting Series

    Using these Immune Boosting Techniques:

    These exercises are for your whole family, not just the individual with FOP. Much like the rest of the Resilient Living program they are helpful to practice during times of stress (and pandemic) but can also be practiced year round. Each video is about four minutes long. Please read the full description for each video before watching the video. 

    **Always follow your doctor’s advice. Energy Medicine exercises are complementary and do not replace professional medical care. Please note that while the IFOPA has arranged for Gloria McCahill to present these resources as a courtesy to its membership, the IFOPA is not affiliated with Empowered by Energy, and does not endorse this or any particular treatment for its members.  The IFOPA encourages its members to consult with their individual physicians prior to beginning any course of treatment.

    Video 1 of 3 in our Immune Boosting Series: This video was created to teach individuals with FOP and their loved ones how to balance the Lung Meridian. The Lung Meridian governs breath and energy and works with the throat, chest and lungs. 

    In this video Gloria:

    • Demonstrates the pathway of the Lung Meridian and how to balance it
    • Shows the lung source point
    • Demonstrates a breath for the emotions associated with the Lung Meridian
    • Discusses and shows an additional immune boosting source point
    • Demonstrates finger rings

    A meridian is an energy pathway. An artery carries blood and a meridian carries energy to the organ it governs. To learn more about meridians, please refer to the 2019 Family Gathering video on pain management. Meridians are arranged in pairs. The two meridians of each pair are connected at the extremities by the entry and exit points. Large Intestine and Lung Meridians are a pair, they are both eliminative organs. Large intestine eliminates digestive waste and the lungs release carbon dioxide. The acupressure massage finger rings demonstrated in this video can be purchased on Amazon.

    Video 2 of 3 in our Immune Boosting Series: This video was created to teach individuals with FOP and their loved ones about Neurolymphatic Reflex points. 

    In this video Gloria demonstrates how to clear the lung, spleen, large intestine, small intestine using the K27s and Central Neurolymphatic Reflex points which are associated with the lymph system. These points help to flush out toxins from the body. Lymph is pumped naturally through daily movement, but when you are unable to have that movement it is harder to rid the body of toxins. Working with these points is a quick way to get meridian energies moving and to boost the healing process. Gloria will also be showing the thymus thump. A daily exercise of working the Neurolymphatic points can improve one's health over time.

    These points can be very tender. If it is very uncomfortable, tap it first a few times and then rub deeply to your comfort level for about 10 seconds, pressing gradually and circling slowly. Start with a few at a time, and then work up to the rest of the points.

    There are many other Neurolymphatic points but for now we will just work with the ones in the video. When you have worked up to doing the points on a regular basis they will be less tender. If there is a wound/FOP flare-up in the area do not do the points in that specific location

     (Click for full-size photo of Neurolymphatic Reflex Points)

    Video 3 of 3 in our Immune Boosting Series: This video was created to teach individuals with FOP and their loved ones about coping with fear and stress using the Triple Warmer Meridian. 

    In this video Gloria shares some stress-reducing exercises. She demonstrates the pathway of the Triple Warmer Meridian which governs the fight, flight, freeze response, the adrenals and the immune system. She also demonstrates smoothing behind the ears, the fear point tap, a breath to use for fear, and another immune boosting point as well as the Spleen 3 source point. The Spleen Meridian also governs the immune system and is extremely important to keep strong.

    (Click for full-size photo of accupresure point on foot)

    Check out the videos in our Stress Busting Series and Empowering the Participant Series!

  • published Mental Health Webinar in Resilient Living Program 2020-06-15 14:41:37 -0400

    Mental Health Webinar

    Recording and Slides

    Brittany Talley, licensed professional counselor and play therapist presented a mental health webinar focusing on two of the major disorders people commonly experience: anxiety and depression. The webinar concluded with options for treatment and an FOP community discussion of how mental health disorders can be compounded by life with FOP. Additional questions from attendees prompted discussions about choosing the right therapist, resources when insurance does not pay for therapy and what you can do to support a loved one you think may be struggling with anxiety or depression. 

    Access the slides

    Resources for finding therapist and support groups:

    National Suicide Prevention Lifeline - +1 (800) 273-8255 (offers 24/7 support)

    Supportive conversations starters for talking with a loved one

  • published FOP Research Strategy in Research 2020-05-28 17:10:27 -0400

    FOP Research Strategy

    IFOPA Research Blueprint 2018-2021


    20% Basic Research
    Answering Priority Research Questions
    The IFOPA will support research that addresses key unanswered questions which will have a near term impact for drug discovery, biomarker identification, and/or for identifying key disease processes in FOP that will lead to a curative treatment.

    30% Drug Discovery
    Advancing Drug Candidates Towards Clinical Trials
    The IFOPA will support discovery research that expands the development and identification of treatments that alone, or in combination, will prevent or reverse heterotopic ossification and FOP flares.  The IFOPA will build and maintain research infrastructure that reduces the barriers and accelerates drug development.

    35% Clinical Trials
    Accelerating Drug Development
    The IFOPA will invest in the development and validation of tools, as well as the analysis of data, that support conducting rigorous clinical trials, requiring the fewest FOP participants and the shortest duration to achieve definitive results.

    15% Clinical Care
    Supporting Early Diagnosis and Achieving Optimal Clinical Care
    The IFOPA will advance research efforts to minimize time to diagnosis and to ensure optimal clinical care for those living with FOP.

    IFOPA Research Strategy 2018-2021

    Basic Research

    Research Objective: Answering Priority Research Questions

    • Establish and maintain a global FOP Biorepository to expand biospecimen access to researchers, enabling the study of FOP biology and testing new treatments
    • Fund research that delineates the immunologic mechanisms in FOP
    • Support research that identifies disease mechanisms that will lead to drugable targets for FOP and/or are markers of disease progression
    • Fund research that further elucidates the mechanisms for muscle biology and regeneration as well as tendon and ligament repair, post bone resection
    • Support in research that explores progenitor fate determination into bone (vs muscle)
    • Support research that uncovers the genetic and epigenetic modifiers that predict variable phenotypic mosaicism within classic and variant FOP
    • (Long-term) Establish a genetic database of FOP patients, which is linked to the FOP Registry, with the goal of looking for genetic modifiers

    Drug Discovery

    Research Objective: Advancing New Drugs Towards Clinical Trials

    • Explore combination treatments that may provide better efficacy, allow for more persistent treatment, or to allow treatment for pediatrics
    • Fund research that evaluates repurposed drugs that already have a known safety profile and could be a complementary treatment option
    • Invest in preclinical research that investigates drugs’ effectiveness following post-resection of heterotopic bone
    • Invest in new therapies that either provide a novel approach to treating FOP or have convincing animal data to warrant further research 
    • Maintain and ensure unencumbered distribution of FOP mice to test new therapeutic compounds
    • Promote the replication of promising preclinical; support research that explores the limitations of existing FOP models or the refinement /development of new models
    • (Long-term) invest invalidated research that has the potential to be curative for FOP

    Clinical Trials

    Research Objective: Accelerating Drug Development

    • Support the IFOPA FOP Registry and the resulting data analysis to further our clinical understanding of FOP; ensure that all data covered by sharing agreements is transferred into the registry and available for future researchers
    • Support efforts to identify biomarkers capable of measuring and predicting early disease progression and/or treatment response. Encourage research that validates surrogate endpoints that have utility in clinical trials
    • Fund research that assesses novel imaging techniques sensitive enough to detect early disease progression
    • Promote responsible trial design to maximize benefit for the FOP population (e.g. minimizes patient time per benefit gained in each trial)
    • Develop educational resources on clinical trials to better educate and enable trial enrollment decisions 
    • (Long-term) Encourage bio-pharmaceutical companies to identify genetic or other characteristics that lead to treatment "Responders" from "Non responders“

    Clinical Care

    Research Objective: Answering Priority Research Questions

    • Explore non-genetic contributions to phenotypic heterogeneity in FOP, including the role of vaccination, injury, exercise, dietary influences, etc.
    • Support efforts to educate the international and local medical community on FOP to ensure earlier diagnosis and appropriate management; support efforts to advance pediatric screening for FOP
    • Fund translational/clinical research that evaluates optimal pain management strategies for FOP

  • published 2020 Family Gathering in IFOPA News 2020-04-29 14:25:08 -0400

    US Family Gathering to be Held as a Virtual Event

    2020 Virtual Family Gathering Preview

    Read more

  • published Clinical Trials and Studies in PATIENTS & FAMILIES 2020-03-24 13:21:33 -0400

  • published Patient Directory and Registry in Patients and Families 2020-03-18 14:16:12 -0400

    Patient Directory and Registry

    We encourage those living with FOP to join both the FOP Registry and the FOP Directory. 

    The online FOP Patient Directory is available at This helpful resource contains profiles for individuals with FOP, complete with photos and contact information, so you can get in touch with others in the community. The FOP Patient Directory is especially helpful for connecting with people who live near you or people of a similar age. 

    Create your profile for the FOP Directory.

    Frequently Asked Questions about the FOP Directory (Button)  

    Please contact Shelly Oliver, Donor Relations and Administrative Coordinator, if you have additional questions.

    The online FOP Registry is available at The registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. Every person living with FOP has unique information to share. The Registry collects this information to help further research to find treatments and, one day, a cure for FOP.

    To contribute to the registry visit and select “Join” to register and complete your Enrollment Survey.  

    Learn more about the registry. 

  • published Meet Our Fundraisers in Fundraise 2020-02-25 11:22:26 -0500

  • published 2019_FOPFamilyGathering 2020-02-10 13:16:35 -0500

  • published 2019_FOPDDF 2020-02-10 13:15:57 -0500

  • published store 2020-01-20 10:56:10 -0500

  • published Research Webinar 2020-01-20 10:54:46 -0500

  • One Family’s Friends Become Friends of the FOP Family

    Read about how two high school friends reconnect to help #cureFOP

    Read more

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