Forging Our Path: Connecting Patients, Clinicians and Families
The IFOPA is committed to fostering more regional connections for those living with FOP. The Midwest Family Gathering and Clinical Meeting is one way we are fostering these connections. Regional meetings are also a great way to begin developing more local clinicians who are prepared to evaluate and treat FOP patients.
Scheduled to be held in St. Louis, Mo., November 5-6, 2016, the event will include presentations from FOP researchers and clinical experts, small group discussions and the chance for people with FOP and their families to connect with one another. A limited number of clinical appointments with Dr. Fred Kaplan will also be available.
Lori Henrotay and Debbie Hazlett, both parents of young adults with FOP, will co-chair the gathering. Debbie has attended past national gatherings in Florida and Philadelphia and is looking forward to the opportunity to meet other parents who are raising children with FOP.
“As a mother, these experiences are invaluable because you can learn about new resources and new research,” Hazlett explains. “It’s a good chance to speak with clinicians—there’s just a strong sense of support you feel from being around other parents experiencing the same things you are.”
Hazlett said she encourages people with FOP and their families in the area to attend the event and “be part of the greater picture.”
“We’re all part of the FOP community—all trying to reach the same goal,” she says. “It’s good to know we’re forging a path together as we work to find a treatment, and one day, a cure.”
The Midwest Family Gathering is the first of several regional meetings the IFOPA hopes to offer each year. Email firstname.lastname@example.org and let us know if you would be interested in attending a regional gathering in your area.
Registration Now Open — IFOPA Midwest Family Gathering
November 5-6, 2016
Holiday Inn SW, Route 66
St. Louis, MO
Gathering events will start early Saturday morning, so you may want to arrive Friday evening. There will be an informal reception for those arriving on Friday.
- FOP Individuals – Complimentary registration
- 1st Caregiver/Family Member – $50 registration fee
- Additional Caregivers/Family Members – $100 per person
- Children 5 to 15 – $75 per person
- Children 4 and under – Complimentary registration
A hotel room for the individual with FOP, and a separate room, if required, for a caregiver will be provided. However, you must go ahead and book the hotel room using a personal credit card to hold the room. To get the IFOPA's special rate of $99 per night, any Family Gathering attendee should use this link. This rate includes breakfast. Reservations must be made by October 13 in order to get the IFOPA's special rate. Click "More Options" under the dates of stay and put "FOP" in as the Group Code.