Your July FOP Connection

July 2023 eNewsletter

This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.

Clinical Trials | FOP Registry | Quality of L.I.F.E. Awards

Everyone Must Help Each Other

Carrie Hoberg doesn’t have FOP. Nor does anyone she loves or even knows. Instead, she discovered FOP by watching a documentary about a young girl with the disease. Carrie was moved by what she saw and has been determined to help Luciana and others like her ever since.

ICC on FOP Issues Updated COVID-19 Guidelines

The International Clinical Council (ICC) on FOP recently updated its COVID-19 Guidelines. They have clearly marked what is updated and what remains unchanged.

We're grateful to this important group of FOP experts for continuing to provide these updates.

Read the Updated COVID-19 Guidelines for FOP families >

IFOPA's ACT for FOP Grant Program Accepting Letters of Intent

The International FOP Association (IFOPA) launched its competitive research grant program – ACT (Accelerating Cures & Treatments) for FOP – in 2015 and has distributed 22 grants totaling $1.2 million.

In 2021 and 2022, the IFOPA chose not to fund any new ACT for FOP grants while we evaluated the research priorities of the FOP community and the IFOPA. Together with advisors in FOP academic research, clinical care, drug development and regulatory science, the IFOPA has now expanded ACT for FOP, its competitive grant program, to encompass three areas:

Basic science
Translational science
Open-source research tools and data

We're pleased to release the 2023 ACT for FOP Grant Program and are seeking letters of intent through September 1, 2023.

Learn more >

Registration Now Open: Financial Planning and Government Benefits (2023 Advocacy Series Webinar)

Join Courtney Jones, Senior Director of Case Management at the Patient Advocate Foundation, for our 2023 Advocacy Series resource webinar on the topic of Financial Planning and Government Benefits. In this webinar, Courtney will be discussing key aspects of insurance navigation and what to know about eligibility when enrolling in benefit programs.

This webinar will take place on Tuesday, August 22 at 7 pm ET.

Please note: This webinar is only applicable to families living in the United States. English and Spanish translation will be available.

FOP Pain Management Series is Underway

In the first event of our five-part series, 25 community members joined Xiaobing Yu, MD who delivered a wonderful presentation on four of the different types of pharmacological treatment used to treat FOP, but that was just the beginning!

Make sure you're registered to participate in the remaining three sessions all scheduled for 12 pm ET/18:00 CEST:

Tuesday, July 25: Aromatherapy as an Integrated Approach
Wednesday, August 2: Physical Therapy Techniques for Pain
Wednesday, August 10: Pain Research in FOP

Watch Dr. Yu's presentation >

The recording of today's presentation by Dr. Edin Randall on pain psychology will be available soon.

Webinar Recording Now Available:

FOP & Sexuality, Part 1

On July 7, Dr. Michelle Fynan joined 25 members of the FOP community to present the first event of a two-part series on sexuality and FOP. In her presentation, Dr. Fynan addressed the importance of sexual health to quality of life, how to increase comfort in discussing sex and sexual health concerns, and the importance of identifying individual needs regarding sexual health.

Watch the recording here >

Stay tuned for more updates about Part 2 of the FOP & Sexuality series, an interactive community discussion.

Monthly Support Group for Adults

with FOP

This online support group provides opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with FOP.

Counseling Psychologist Dr. Al Freedman, who also had a child with a rare disease, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.

Due to the conversational nature of the meeting, participants must be able to speak and understand English.

Join us Tuesday, August 8, Noon Eastern Time / 18:00 CEST.

Bereaved Families Virtual Meetup

Virtual Meetups of the Bereaved Families Group are an opportunity for those who have lost a friend or loved one to FOP to come together virtually to support each other. The next meeting will be Thursday, August 24, at 7 pm ET.

Due to the conversational nature of the meeting, participants must be able to speak and understand English.

marhair1@frontier.com

See All of the FUN Planned for the November 2023 Family Gathering (In Person and Virtual)

Many families come to the annual FOP Family Gathering expecting to increase their knowledge of how to manage the medical aspects and daily symptoms of life with FOP. What you may not know is that we also aim to have a good time together (whether attending in person or virtually) with the help of community activities and meaningful group interactions spaced throughout the event.

Whether you join in on a self-care session, small-group discussion or an interactive art project, we hope you'll enjoy making memories with your fellow FOP family members.

We value this time together for the opportunity to boost community spirit just as much as we treasure this time for its ability to push our knowledge to the next level.

Check out the community social events on the agenda >

Check Out This FUNdraising Event Benefiting the IFOPA in August

The 9th annual Barnival in honor of Pat Doerr will be held on Sunday, August 27, 12-6 pm, at the Cedar Hollow Inn in Malvern, Pennsylvania. If you're in the area, stop by for food, drinks, music, games (including a dunk tank) and more!

We're grateful to Jeannie Peeper Award winner Stephen Guiseppe and his team at the Inn for hosting this wonderful event each year.