2024 In-Person Youth Family Programming

Please note, this survey is for parents of children with FOP between the ages of 5 and 15 who reside in the U.S.

Thanks to the generous support of another non-profit serving families impacted by rare diseases, we are thrilled to share news of two in-person programs for families who have a child with FOP between the ages of 5 and 15 in 2024. To assist in our planning, please complete this brief survey to share your thoughts on participating in one or both events.

We'll be hosting our signature conference, the FOP Family Gathering, in Denver, Colorado in 2024. Individuals with FOP of all ages and their families are invited to attend this three-day meeting which focuses on providing education, connection, and collaboration in the FOP community. With general sessions on FOP clinical trials, individual meetings with FOP medical experts and workshops focused on providing insight into navigating life with FOP, the Family Gathering is the largest FOP community event of the year.  As in years past, the Family Gathering is likely to be held the second or third weekend in November. While we do offer travel and lodging stipends for families to attend the Family Gathering, financial support is limited and costs to participate include travel to Denver, CO, 3-4 nights of hotel accommodations, and registration fees. Registration for the person with FOP is complimentary and the first caregiver is discounted.

**NEW IN 2024*** Through the work of The Hole in the Wall Gang Camp, families with a child who has FOP, between the ages of 5 and 15, will have the opportunity to participate in a Weekend Family Camp in Queenstown, Maryland in the summer of 2024. As a former full-time employee at The Hole in the Wall Gang Camp, IFOPA Family Services Manager, Hope Newport is excited for this opportunity for families. The Hole in the Wall Gang Camp provides "a different kind of healing" in a joy-filled, inclusive community where children – and families in all the forms they come in – are not alone in their challenges. The Family Camp will focus on fun and connection (not FOP). There will be a variety of activities for children and adults, including arts & crafts, woodshop, and outdoor adventures. The Hole in the Wall Gang Camp has a medical facility designed to keep all campers safe with doctors and nurses available for medical emergencies. Parents and caregivers will be responsible for the daily medical care of their children. Camp will provide lodging, meals, and all daily activities to families free of charge. Travel support is available on an as-needed basis. 

Please contact Hope Newport at hope.newport@ifopa.org or 1(785)294-1607 with any questions or comments. 

Name*
If given the opportunity to attend a Family Weekend and/or a Family Gathering which option best fits the decision you think you would make about participation:*
The only cost associated with participating in the Family Camp is your travel to the Camp location in Maryland. Would you require travel support to participate in the Family Camp?
The cost associated with participating in the Family Gathering are travel, lodging/hotel while on site, and registration fees of $50-$100 for all members of the family except for the individual with FOP. Would you require travel and or lodging support to participate in the Family Gathering?
Please note, families will not be eligible for financial assistance to attend both events. The only cost associated with participating in the Family Camp is your travel to the Camp location. The cost associated with participating in the Family Gathering are travel, lodging/hotel while on site, and registration fees of $50-$100 for all members of the family except for the individual with FOP. Would you require travel and or lodging support to participate in the Family Camp and the Family Gathering?
Is there a specific month of the summer that would work best for you to attend Family Camp:
Please check all that apply.
Please include the individual with FOP in this count.
Would you prefer to have an FOP medical expert onsite at the Family Camp??
Please check all that apply.
In weighing the decision to attend a Family Camp or Family Gathering which two factors are most important?
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