The IFOPA Receives $10,000 Global Genes RARE Patient Impact Grant to Launch Resiliency Training Program

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Connecting. Learning. Growing.

The 2018 Family Gathering was held Nov. 16-18 in Baltimore, Maryland. We welcomed nearly 50 families and 200 attendees for a weekend of connection, learning, and growth. For a snapshot of the weekend's activities and to view the photo gallery, click here.

We are pleased to share recordings of presentations from the following speakers.

For translated subtitles of the recordings please follow these instructions. Please note that the subtitles provided are auto-translated. The translations are not professionally translated and may include some inaccuracies in names and meaning.

The IFOPA: An Overview of Family Services and Fundraising

Welcome Remarks and Your IFOPA
Executive Director, Michelle Davis, talks about the IFOPA and its growth and achievements over the past 30 years as well as the activities taking place at the 2018 Family Gathering.  

Resources for Family Education and Support
Family Services Manager Hope Newport provides an overview of the resources for family support and education through the IFOPA.

Friend-raising and Fundraising for FOP
Cathryn Roys, Community Fundraising Manager, talks about the current and upcoming opportunities to fundraise for the IFOPA.

A Research Update and Q&A with FOP Experts

The Maps, Taps and FAPs of FOP
Fred Kaplan, MD discusses research in the FOP field and the progress that has been made over recent years.

Common Health Questions of FOP’ers Panel
The top medical experts in FOP answer questions from the community including pulmonary health, kidney stones, puberty, menopause, flare-ups at altitude, tetanus shots, chicken pox and shingles.

Panelists include Drs. Mona Al Mukaddam, Ed Hsiao, Fred Kaplan and Bob Pignolo.

Clinical Studies & Trials and You

Understanding Clinical Studies and Trials
Chris Scott, MD provides an overview of the drug development and approval process and the role you play in clinical trials.

The IFOPA: Supporting and Enabling the FOP Research Community
Adam Sherman, IFOPA Research Development & Partnerships Director, shares about the variety of ways the IFOPA supports FOP research.  

FOP Patient Registry: Patient-driven data for a cure
FOP Registry Project Director, Mary Anne Fitzpatrick, discusses the patient registry and how it is one of the greatest opportunities for individuals with FOP to contribute to research.

SUPPORTING THE ENTIRE FOP INDIVIDUAL AND FAMILY

The Oral Health Treatment Discussion for Patients with FOP
FOP dental experts Corrie Crowe, DDS and Clive Friedman, DDS, discuss the importance of proactive oral health and how to navigate some of the issues that may arise in oral health care.

Resource Connect: A Discussion Group
FOP community representatives discuss how they and their loved ones have used tools in a variety of ways to support continued independence, boost confidence and promote a balance for caregivers.

Panelists include Emma Albee, Amanda Cali, Jasmin Floyd, and Kristi Gonzales.

Understanding Injections and Working Towards a Successful Blood Draw
Child life specialist Becky Halagarda covers different ways to support the pediatric population during hospital procedures, specifically blood draws.

Chronic Pain and Management
Glenn Treisman, MD, PhD, Director of the John Hopkins Pain Treatment Program, talks about the challenges of opioid use and the complexity of pain management.

Resilience in the Midst of Challenge
Social worker Susan Rieger discusses the value of a resilient mindset for families and individuals coping with the stress of FOP.

Surgery and Anesthesia

What You Need to Know About Surgery and Anesthesia with FOP
Anesthesiologist Zvi Grunwald, MD explains how to prepare for surgery and considerations for anesthesia relevant to the FOP community.

Jack Sholund suggests newly diagnosed FOP’ers take advantage of the opportunity to connect with other families experiencing the same situation.

“Don’t be afraid to seek other families that have a child or adult with FOP and share information. And whatever obstacles you or your family member may face, follow the interests that make you happy,” he advises.

When Jack was diagnosed with FOP in 1966, there wasn’t an IFOPA. There wasn’t a support group, or research moving forward, financial assistance (the Quality of L.I.F.E. Awards) for accessories and equipment needed to encourage independent living, words of advice in regard to schooling for a child with FOP, or get togethers for families.

But then there was Jeannie Peeper, and Dr. Kaplan. Jack was pen pals with Jeannie before the IFOPA existed, yet it was 25 years after his diagnosis before he met someone else living with FOP in person.

His favorite memory is attending the very first FOP symposium held in Philadelphia in 1991 with both of his parents. “I made friendships that still continue today. It was an honor to meet Dr. Kaplan and his team and to see how much he cares for his patients. There I learned many things that were helpful in my life.”

Being with the IFOPA from the start is a special experience for Jack. As one of the IFOPA’s original founders, he’s proud to see how the IFOPA has grown as a network of families who support and advise each other. The continued educational opportunities for medical professionals, as well as family meetings being held not only in the USA, but around the world, have been especially meaningful for Jack to witness. Jack knows raising funds for research is a high priority and appreciates how the IFOPA shares fundraising ideas to help friends and family of those living with FOP take an active role.

He also sees great value in the What is FOP? Guidebook that helps families understand necessary precautions for dealing with routine activities and medical situations. It was an incredible honor for Jack that his watercolor painting of a monarch butterfly was featured on the cover of the the Guidebook.

Jack’s role as an optimistic advocate for FOP education and awareness strengthen the foundation of everything he admires about the IFOPA, including the role the organization plays in getting the word out and finding more members with FOP from the USA and abroad. I see the IFOPA continuing to educate families and the medical profession here in the USA and around the world.

"It doesn’t matter if a person with FOP is five or 55, there are still things they can learn to help their life,” he reflects.

Keeping hope close at heart

Make a tangible difference

Finding a support system

New Community Fundraising Manager

Taking risks and seeking new adventures