Child Care Room (Fun Zone)

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Fibrodysplasia Ossificans Progressiva (FOP) is an ultra-rare (1 in 2 million) genetic disease that causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton. There is currently no treatment or cure for the disease.

The International Fibrodysplasia Ossificans Progressiva Association is hosting a family gathering in Orlando November 14-16. The event will be held at the Wyndham Grand Orlando Resort at Bonnet Creek. The family gathering gives patients and families from all over the country the opportunity to gather together to connect, learn and grow. The days are filled with presentations by various experts in the FOP field. For our younger participants we offer child care, also known as The Fun Zone!

The progression of FOP varies from person to person. In our pediatric community some children are mildly affected with very little mobility loss while others require the use of wheelchairs and are unable to lift their arms due to restricted movement in the shoulder. Participants in the child care room range from the ages of 3 to 16. There are approximately 20 children signed up to participate. We have planned a wide variety of activities to meet individual needs. The themes for the Fun Zone are: Science and Exploration (Friday) and Olympics and the Ultimate Team (Saturday.)

Volunteers should be prepared to sign a background check form and have a conversation with the Family Services Manager to learn more about this volunteer opportunity. Upon completion of volunteer hours the Family Services Manager will happily provide volunteers with a letter confirming their hours and responsibilities.

Available Shifts (May sign up for more than one):

• November 14th-Thursday morning/mid-day: 8:30 p.m.- 2:30 p.m.

• November 15th-Friday morning/mid-day: 8:30 a.m.- 1:30 p.m.

• November 15th-Friday afternoon/evening: 2:00 p.m.- 7:00 p.m.

• November 16th-Saturday morning/midday: 8:30 a.m.- 12:30 p.m.

• November 18th-Saturday afternoon: 1:00 p.m.-5:15 p.m.

Thank you for considering this opportunity and for you interest in supporting the FOP Community! If you are interested in volunteering or have questions, please contact me at:

Hope.newport@ifopa.org

(816)854-0920