Calendar

  • Ability to Self-replenish

    Tuesday, July 21, 2020 at 08:00 PM

    The ability to self-replenish is recognizing when our inner stores of energy and positive experience are becoming depleted and doing what it takes to fill ourselves up again.

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

    Time: July 21, 2020 08:00 PM in Eastern Time (US and Canada)

    Register Here >

  • 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 >

     

  • 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 >

     

  • FOP Ashley's Cure Gala

    Monday, October 05, 2020 at 06:00 PM
    The Wagner Hotel in New York, NY

    Join us for the 4th FOP Ashley's Cure gala in honor of Ashley Martucci. This special event benefiting the IFOPA and the University of Pennsylvania will be a gathering of family, friends and colleagues enjoying cocktails, dinner, and auctions - both silent and live - with one of a kind items and experiences. Sponsorships and tickets are available here

     

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

    Saturday, October 10, 2020 at 09:00 AM

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

    ~14 scenic miles on the C&D Canal Trails

    Saturday, October 10, 2020

    Rolling Start 9 – 10:30am

    Fort DuPont State Park

    BIKE ACROSS DELAWARE & BE BUSSED BACK!

     

    Local mom, 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!*

    Starting at Fort DuPont State Park, cyclists will head west to Chesapeake City, Maryland. On the C&D Canal Recreational Trails, riders will enjoy the sights and sounds of wildlife, watercraft, and overhead train and highway bridges spanning the canal. At the midway point, Grain H20 Restaurant will provide water for riders to refill their bottles. Ending in Chesapeake City at the Volunteer Fire Company Station #2, buses will return riders to the start, while bikes remain safely behind, to be picked up later by their owners.

    *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.

    Event Details:

    • Vehicle Parking: Fort DuPont State Park Parade Ground (Kent Avenue, Delaware City, DE)
    • Rolling Start: 9 – 10:30am. Upon signing in, riders will be guided to the trail by volunteers. A rolling start should help riders stay safely spaced along the trail system.
    • Midway Water Tent: 9:30am – Noon. Riders can refill their bottles at Grain H20 Restaurant parking lot (3006 Summit Harbor Pl, Bear, DE). No other water is available on the trail system, so plan wisely.
    • Rolling Finish: At the trail’s end, riders will be guided by volunteers to the Chesapeake City Fire Station #2 (215 Lock Street, Chesapeake City, MD).
    • Buses: 11am – 1pm. Leaving every ~30 minutes from the fire station, buses will return riders to the Fort DuPont State Park Parade Ground.
    • Bike Parking: Bikes will remain parked behind the fire station, until picked up by their owners. Bikes must be picked up NO LATER THAN 3PM.
    • Event ID Bands: ID bands are to be worn and displayed on the C&D Canal trails, at the water station, at the fire station, on the bus, and to claim bikes.
    • Bathrooms: Eco-friendly facilities dot the trail, but they do not have water.

    Preparation Details: 

    • Gear YOU should bring: Helmet, full water bottle(s), picnic lunch/snacks, sunscreen, sunglasses, perhaps binoculars
    • Bike Trail Etiquette:
      • Stay to the right.
      • Pass on the left, sounding a bell/horn or announcing, “On your left!”
      • When stopping, move entirely off of the paved trail to your right.
    • FREE & Discount Promotions:
      • FREE Bike Safety Inspections, plus discounts on parts/services, provided by Bike Line of Middletown, with proof of your “B.A.D. to the Bone” rider registration (bikes can be taken to the shop at 486 Middletown Warwick Rd, Middletown, DE prior to the event or bikes can be checked at the Bike Line tent onsite day of the event)

    Rider Registration:

    • $30 per person by September 30, 2020
    • $40 per person by October 9, 2020 (online registration closes day before, $40 on-site registration is available day of event)

    Click here for rider registration

    Volunteer Opportunities:

    • Parking Volunteers: Direct attendees where to park on the Parade Ground at Fort DuPont State Park. 8 – 11am. (Kent Avenue, Delaware City, DE)
    • Registration Volunteer: Help participants sign in or register at the event. 8 - 11am (Kent Avenue, Delaware City, DE)
    • Starting Volunteer: Assist participants in safely walking their bikes to the start of the trail. 8 - 11am (Kent Avenue, Delaware City, DE)
    • Water Volunteer: Help riders refill their bottles at the Grain H2O Restaurant parking lot tent. 9am - Noon (3006 Summit Harbor Pl, Bear, DE)
    • Finishing Volunteer: Assist participants in safely walking their bikes from the end of the trail to the Chesapeake Fire Station. 10am – 1pm (215 Lock Street, Chesapeake City, MD)
    • Bike-Valet Volunteer: At the fire station, park bikes as labeled. When owners return to reclaim bikes, check that ID bands match, and help owners walk their bikes to their vehicles. Noon – 3pm (215 Lock Street, Chesapeake City, MD)
    • Bus Volunteer: Assist participants in getting on & off buses, ride along, and help keep the buses tidy. 10:30am - 1:30pm (Kent Avenue, Delaware City, DE)

    Click here to Volunteer 

    Can't attend? You can still support the event! Click here to Donate

    Looking to support the event in a bigger way? Click here to Sponsor the event

     

    b-b-b-BIG thanks to:

    Fort DuPont Development Corporation

    Chesapeake City Volunteer Fire Co. No. 1

    Caravel Academy

    Grain H20

    LifeHouse

    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

    Our Volunteers!

  • Sense of Coherence

    Tuesday, October 20, 2020 at 08:00 PM

    Sense of coherence is focusing on a sense of order and remembering that there are a great deal of resources available in life. During times of distress action eases despair.

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

    Time: October 20, 2020 08:00 PM in Eastern Time (US and Canada)

    Register Here >

  • 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 >

  • Joshua's Future of Promises 2020 Bingo for a Cure

    Sunday, November 29, 2020 at 01:00 PM

    Make plans to join us for the 13th annual Joshua's Future of Promises Bingo for a Cure in honor of Joshua Scoble! Doors open at 10:30 am and games begin at 1:00 pm. 

    Tickets: $30 in advance or $35 at the door. Ticket package allows you to play every game and you may purchase additional boards. Tickets are limited so buy them early! Reservations suggested! Everyone, regardless of age, must have a ticket for entry! To purchase tickets, contact Chrissy at auntchrissy@joshuasfop.com

    All games have a cash prize of at least $200. Guaranteed $4,000 payout. Grand Prize will be $1,000 cash! There will be lots of exciting raffles, drawings, and a huge Basket Raffle Auction.

    Proceeds benefit Joshua's Future Of Promises.

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