Merritt Engel published Poster from the Resilient Living Program Authored by the IFOPA at the 2020 NORD Rare Diseases & Orphan Products Breakthrough Summit in IFOPA News 2020-10-08 15:50:20 -0400
Merritt Engel published Dental Care Travel Stipend in Oral Health and Dentistry 2020-07-21 10:02:01 -0400
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 firstname.lastname@example.org or +1 785-294-1607.
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 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:
- 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.
- 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 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)
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 facebook.com/fundraisers or contact Cathryn Roys, Community Fundraising Manager.
Share your personal fundraising page or share ifopa.org/donate 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.
- 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:
Contact Cathryn for help in planning your virtual event.
- 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 facebook.com/fundraisers or contact Cathryn Roys, Community Fundraising Manager.
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.
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.
Check out the videos in our Stress Busting Series and Empowering the Participant Series!
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.
Resources for finding therapist and support groups:
National Suicide Prevention Lifeline - +1 (800) 273-8255 (offers 24/7 support)
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
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
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
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“
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
Merritt Engel published Clinical Trials and Studies in PATIENTS & FAMILIES 2020-03-24 13:21:33 -0400
Merritt Engel published Patient Directory and Registry in Patients and Families 2020-03-18 14:16:12 -0400
The online FOP Patient Directory is available at fopdirectory.org. 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 fopregistry.org. 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 fopregistry.org and select “Join” to register and complete your Enrollment Survey.
Learn more about the registry.
Merritt Engel published Important Announcement and Letter from Ipsen Regarding the MOVE Trial and a Pause in Dosing in FOP News 2020-01-24 09:47:20 -0500
Merritt Engel published Regeneron Releases Phase 2 Trial Results and Shares Next Steps in FOP News 2020-01-15 10:57:36 -0500
Merritt Engel published One Family’s Friends Become Friends of the FOP Family in IFOPA News 2020-01-10 17:46:18 -0500
Read about how two high school friends reconnect to help #cureFOPRead more
Merritt Engel published Resilient Living Educational Series in Resilient Living Program 2020-01-09 15:10:34 -0500
The Resilient Living Educational Series is an opportunity for members of the FOP community to come together virtually to learn about ways to incorporate habits that support their mental and physical well-being in their day-to-day living.
Trainings will take place every third or fourth Tuesday of the month at 8 pm EST/7 pm CST/6 pm MST/5 pm PST.
Each training will be one hour long with the first half consisting of a lecture style presentation of the material and the second half a discussion-based exploration of the exercises associated with practicing that facet of resilience.
Trainings will only be available in the English language.
We'll start this series off by looking at some of the important aspects of implementing resilient habits and learning why resilience is important for our mind and body.
Session 2: Emotional Expressiveness Presentation Slides
Emotional expressiveness is the awareness of basic emotions as they occur and the ability to process them appropriately.
The ability to self-calm is using self-awareness to practice relaxation techniques and self-regulation skills to align our intellect, emotions, actions and words.
Self-care is choosing healthy behaviors that balance the effects of emotional and physical stressors.
Hardiness is our ability to place ourselves at the center of the controls and realize that challenges create opportunities for potential learning, growth and personal betterment.
The ability to self-replenish is recognizing when our inner stores of energy and positive experience are becoming depleted and doing what it takes to fill ourselves up again.
Self-supporting talk is challenging unproductive thoughts and replacing critical thoughts with more productive ones.
Optimism is remembering that our perception creates reality and that we must have hope to define our goals and make a plan to achieve them.
Sense of coherence is focusing on a sense of order and remembering that there are a great deal of resources available in life. During times of distress action eases despair.
Social support is about turning to the people who support you when you need them and remembering that reciprocating that support is key to a healthy relationship.
Merritt Engel published Regeneron Pharmaceutical Releases Results of Phase 2 of the LUMINA-1 Trial in FOP News 2020-01-09 11:09:46 -0500