Calendar of Events

  • Resiliency Webinar: Non-judgement/Self-supporting Talk

    Tuesday, August 18, 2020 at 08:00 PM

    Self-supporting talk is challenging unproductive thoughts and replacing critical thoughts with more productive ones. 

    Please submit questions ahead of time by emailing Family Services Manager Hope Newport.

    Time: August 18, 2020 08:00 PM in Eastern Time (US and Canada)

    Register Here >

     

  • Midnight Sun Color Run 2020

    Monday, August 24, 2020 at 06:00 PM through August 30, 2020

    The FUNNEST 5K above the Arctic Circle... and the fun helps #cureFOP!

    Due to COVID-19, this year's event will be VIRTUAL so whether you live in Kotzebue, across Alaska or beyond, join us to help color out FOP!

    • During the week of August 24-29, make plans to do your own unique Midnight Sun Color Run!
    • You choose the day and time to run or walk 5k.
    • For Kotzebue participants, look for clues along the way to find color packets
    • Wherever you are, take pictures and post them on social media with #curefop and #midnightsuncolorrun...if you find a color packet, throw your color and share the fun with your colorful pictures

    For more information, visit the event page.

  • Energy Medicine for FOP-Related Issues

    Tuesday, August 25, 2020 at 02:00 PM

    Join Gloria McCahill, an Eden Energy Medicine Advanced Practitioner and teacher and one of her clients, FOP community member Ian as Gloria completes our Energy Medicine educational series with this webinar on how to prepare yourself and the person with FOP for Energy Medicine work. Gloria and Ian will demonstrate techniques and tools to meet the specific needs of the FOP community. This webinar is for individual's with FOP and caregivers and will focus on ways that the individual and the caregiver can be involved in their Energy Medicine practices. For an introduction to Energy Medicine and for examples of specific techniques Gloria has already taught the FOP community visit: www.ifopa.org/energy_medicine

    Please submit questions ahead of time by emailing Family Services Manager Hope Newport at hope.newport@ifopa.org.

  • In Pursuit of a Cure - An Evening of Inspiration and Possibility (North/Central/South America)

    Wednesday, August 26, 2020 at 07:00 PM

    Join the IFOPA for an exciting evening in support of expanding FOP research with new ACT for FOP research grants and the first-ever gene therapy grant. It's a virtual event, so you and your family and friends can take part from the comfort of your homes! This viewing time is on August 26 at 7 pm ET/11 pm GMT.

    The event will be live broadcast on the IFOPA's Facebook LIVE and YouTube on both August 26 and 27 and you can select the viewing time that works best for you. Visit here for more information and to RSVP. 

    To watch via Facebook LIVE, visit facebook.com/IFOPA

    To watch via YouTube, visit youtube.com/ifopa

  • In Pursuit of a Cure - An Evening of Inspiration and Possibility (North/Central/South America)

    Wednesday, August 26, 2020 at 09:00 PM

    Join the IFOPA for an exciting evening in support of expanding FOP research with new ACT for FOP research grants and the first-ever gene therapy grant. It's a virtual event, so you and your family and friends can take part from the comfort of your homes! This viewing time is on August 26 at 9 pm ET/1 am GMT.

    The event will be live broadcast on the IFOPA's Facebook LIVE and YouTube on both August 26 and 27 and you can select the viewing time that works best for you. Visit here for more information and to RSVP. 

    To watch via Facebook LIVE, visit facebook.com/IFOPA

    To watch via YouTube, visit youtube.com/ifopa

  • In Pursuit of a Cure - An Evening of Inspiration and Possibility (Australia & New Zealand)

    Thursday, August 27, 2020 at 05:00 AM

    Join the IFOPA for an exciting evening in support of expanding FOP research with new ACT for FOP research grants and the first-ever gene therapy grant. It's a virtual event, so you and your family and friends can take part from the comfort of your homes! This viewing time is for our friends in Australia and New Zealand and can be seen on August 27 at 9 am GMT (6:30 pm in South Australia).

    The event will be live broadcast on the IFOPA's Facebook LIVE and YouTube on both August 26 and 27 and you can select the viewing time that works best for you. Visit here for more information and to RSVP. 

    To watch via Facebook LIVE, visit facebook.com/IFOPA

    To watch via YouTube, visit youtube.com/ifopa

  • In Pursuit of a Cure - An Evening of Inspiration and Possibility (Hong Kong & Asia)

    Thursday, August 27, 2020 at 07:00 AM

    Join the IFOPA for an exciting evening in support of expanding FOP research with new ACT for FOP research grants and the first-ever gene therapy grant. It's a virtual event, so you and your family and friends can take part from the comfort of your homes! This viewing time is for our friends in Hong Kong and Asia and can be seen on August 27 at 11 am GMT (7:00 am HKT).

    The event will be live broadcast on the IFOPA's Facebook LIVE and YouTube on both August 26 and 27 and you can select the viewing time that works best for you. Visit here for more information and to RSVP. 

    To watch via Facebook LIVE, visit facebook.com/IFOPA

    To watch via YouTube, visit youtube.com/ifopa

  • In Pursuit of a Cure - An Evening of Inspiration and Possibility (UK, Europe & South Africa)

    Thursday, August 27, 2020 at 02:00 PM

    Join the IFOPA for an exciting evening in support of expanding FOP research with new ACT for FOP research grants and the first-ever gene therapy grant. It's a virtual event, so you and your family and friends can take part from the comfort of your homes! This viewing time is for our friends in the United Kingdom, Europe & South Africa and can be seen on August 27 at 6 pm GMT (7 pm United Kingdom, 8 pm Europe and South Africa).

    The event will be live broadcast on the IFOPA's Facebook LIVE and YouTube on both August 26 and 27 and you can select the viewing time that works best for you. Visit here for more information and to RSVP. 

    To watch via Facebook LIVE, visit facebook.com/IFOPA

    To watch via YouTube, visit youtube.com/ifopa

  • Resiliency Webinar: Hope and Optimism

    Tuesday, September 15, 2020 at 08:00 PM

    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.

    Please submit questions ahead of time by emailing Family Services Manager Hope Newport.

    Time: September 15, 2020 08:00 PM in Eastern Time (US and Canada)

    Register Here >

     

  • B.A.D. to the Bone - Bike Across Delaware to Cure FOP

    Thursday, October 01, 2020 at 12:00 PM

    B.A.D. to the Bone – Bike Across Delaware to Cure FOP

    October 1 - October 31, 2020

    A VIRTUAL Event

     

    Wendy Henke has planned a family-friendly bike ride in honor of her son Justin who has fibrodysplasia ossificans progressiva (FOP). FOP tragically transforms connective tissue into bone, resulting in rigid immobility. No effective treatments exist for the world’s ~900 known patients. Let’s change that!*

    Because of mandates regarding COVID-19, the in-person event, originally planned along the C&D Canal, has been changed to a virtual, 'bare bones' event.

    Support the B.A.D. to the Bone mission, by donating and perhaps riding 15 miles (the distance across Delaware) in honor of Justin!

    Between now and October 31, if you ride, please post a picture of yourself and tag it with #curefop. 

    *Proceeds will benefit the mission-critical work of the IFOPA which funds research to find treatments and a cure for FOP, provides support programs for those with FOP and their families and caregivers, and raises awareness about FOP.

    Click here for more information, or to donate or sponsor B.A.D. to the Bone.


    b-b-b-BIG thanks to:

    Fort DuPont Development Corporation

    Chesapeake City Volunteer Fire Co. No. 1

    Caravel Academy

    Grain H20

    Bike Line of Middletown

    Smartech Electrical

    Premier Physical Therapy & Sports Performance

    Bright Dental

    Middletown Family Care

    Middletown Veterinary Hospital

    Strano & Feeley Family Funeral Home

    Melanie & Myles Bennett

     

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