September 2020 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.
Thank You for Joining Us
In Pursuit of a Cure!

We’re grateful for all the support and generosity shown during In Pursuit of a Cure – An Evening of Inspiration and Possibility. We’re excited to announce that, through September 14, the FOP community raised nearly $267,000 to expand research!

Thank you to everyone who donated to help fund new ACT for FOP drug development research grants and the IFOPA’s first-ever research grant in gene therapy.

If you weren't able to attend, you can still watch the recording to learn more about gene therapy and the search for a cure. And be sure to check out a special thank you from kids in the FOP community.
 

If you haven’t yet had a chance to give, you can still support ACT for FOP drug development grants and gene therapy research by giving at ifopa.org/curefop_give. If you prefer to give by mail, please send to: IFOPA,
PO Box 800084, Kansas City, MO 64180.
See What the Ability Toolbox Program Accomplished in Its First Year

The Ability Toolbox: Everyday Tools for Independent Living Program was launched in 2019 with generous funding from The Radiant Hope Foundation, Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines.

The program empowers individuals with FOP and supports their caregivers by promoting independence and a problem-solving mindset as an important tool for dealing with FOP progression. The program made major strides in its first year.

It's Not Too Late to Register for Today's Webinar on Maintaining Hope and Optimism in Times
of Stress

Perception creates reality. Our perception influences how we interact with the world around us. Practicing hope and optimism means being able to see how we can improve and take action steps to make a difference.

On September 15 at 8 pm ET/7 pm CT/6 pm MT/
5 pm PT, the Resilient Living Educational Series will focus on a variety of techniques, including:

  • Setting goals
  • Creating action steps
  • Working around barriers
  • Using gratitude to rewire our brain to be more positive
Save the Date! October 1 & 2
Shop at KendraScott.com and Raise Funds for the IFOPA

Shop for yourself or do some early holiday shopping on October 1 & 2 and 20% of your purchase will benefit the IFOPA when you use the code GIVEBACK8753.

Be sure to share the code with friends and family. The more people that shop using the code GIVEBACK8753, the more that will be donated to the IFOPA.
Community Fundraising for the IFOPA Goes Virtual

As the FOP community adjusted to the unexpected changes COVID-19 brought, it was necessary for the IFOPA to cancel or postpone a few fundraising events in order to ensure the safety of our family, friends and communities. 

Several FOP families got creative and changed – some even developed – fundraising events that would work in a virtual format so fundraising could continue.

Did You Miss the Energy Medicine Demonstration? Webinar Recording Now Available

Energy Medicine can be a valuable tool in pain management, emotional well-being and empowering individual's with FOP in their own care. Eden Energy Medicine Advanced Practitioner Gloria McCahill and FOP community member Ian Cali provided a wonderful demonstration and perspective on how Energy Medicine and the FOP body can work together to improve the quality of life for the individual.

You can find the webinar recording and other energy medicine educational content Gloria has provided the IFOPA's Resilient Living at ifopa.org/energy_medicine. All of the educational material can be accessed from this one page to encourage members of the community to continue to learn more at their own pace.

Check out the 2020 Virtual FOP Family Gathering Preliminary Itinerary and Sign Up for Social Events

We are excited to share a detailed look at the presentation and small group discussion schedule for the Virtual Family Gathering this November! From the link below, click "Preview the Itinerary."

Also, now's your chance to start planning your social activities for the weekend! Sign up to take part in the fun by reading more about the Friday and Saturday evening social events we'll be offering. Whether you like a spirited game of Bingo, a happy hour cocktail or a relaxing campfire, we've got you covered! From the link below, click "Sign Up for Social Events."

The Henke Family Invites You to Get B.A.D. to the Bone

FOP mom Wendy Henke has planned a family-friendly bike ride in honor of her son Justin, and you’re invited to participate wherever you live!

The original in-person event was planned along the C&D Canal so participants could Bike Across Delaware. When COVID-19 caused a shift in plans, Wendy decided to remake B.A.D. to the Bone into a ‘bare bones’ event where participants from anywhere can donate and ride 15 miles (the distance across Delaware). You can complete your 15-mile ride any time during the month of October.

September 24 Virtual Meetup for FOP Bereaved Families

FOP Bereaved Families is a private group, managed by FOP community members Marilyn Hair and Nancy Sando, for family members and close friends of loved ones with FOP who have passed away.

This group is an opportunity for those who have lost a family member to FOP to support each other in loss and grief.

During the month of September, the group will be reading Resilient Grieving by Lucy Hone (available at AmazonSmile) and discussing the book together in their next meeting.

Date and Time: September 24 at 7 pm ET/6 pm CT/5 pm MT/4 pm PT
Registration: Every participant will need to register in order to receive the link to join the Zoom meeting. Registration is required as a security feature for the meeting.