Calendar of Events

  • 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

     

  • Nutrition and FOP

    Wednesday, October 28, 2020 at 08:00 PM

    Join presenter Natalie Ledesma, MS, RDN, CSO, CLT on Wednesday, October 28th at 8 pm ET/7 pm CT/6 pm MT/5 pm PT. Natalie is a seasoned registered dietitian nutritionist with over 20 years of experience. Creating this presentation specifically for the FOP community Natalie will address FOP-related nutrition issues and some helpful ways to manage challenges including for example limited jaw mobility and decreased appetite.

    Learn more about Natalie and watch a free recording of her webinar on Gastrointestinal Health & the Microbiome at https://natalieledesma.com/classes/gihealth-webinar.

    Please submit any questions you have ahead of time to hope.newport@ifopa.org.

  • Resiliency Webinar: Social Support

    Tuesday, November 24, 2020 at 08:00 PM

    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.

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

    Time: November 24, 2020 08:00 PM in Eastern Time (US and Canada)

    Register Here >

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