THURSDAY, NOVEMBER 13
10 am to 7 pm Arrivals and Registration (Bloomington Foyer)
3:30 to 4 pm First-Time Attendee Welcome (Grand Ballroom East A)
4 to 6 pm Fun Zone / Teen Zone Meet and Greet sponsored by Ipsen (Bloomington and Edina)
5 to 6 pm Caring for Yourself and Others: At the Conference and Beyond (Grand Ballroom East A)
5 to 5:45: Emma Nadler, LPCC
5:45 to 6 pm: Hope Newport, Family Services Manager, IFOPA
6:30 pm Opening Dinner (Grand Ballroom C/W)
7 pm Welcome to the 2025 FOP Family Gathering (Grand Ballroom C/W)
Michelle Davis, Executive Director, IFOPA
7:05 pm Opening Session: The Evolution of the IFOPA and the FOP Community: A Roundtable Discussion (Grand Ballroom C/W)
Rebecca Spartz (Wallace), IFOPA Board of Directors Chair
Emma Albee, IFOPA Board of Directors
IFOPA Staff
FRIDAY, NOVEMBER 14
7:30 to 9 am Breakfast and Time to Connect (Grand Ballroom Foyer)
8:45 am to 12:45pm Fun Zone / Teen Zone sponsored by Ipsen (Bloomington and Edina)
9 to 9:05 am Welcome and Opening (Grand Ballroom C/W)
Hope Newport, IFOPA
Amanda Seeff-Charny, Executive Director of Patient Advocacy, Regeneron Pharmaceuticals
9:05 to 11 am FOP Treater Insights on Care Management and Questions from the Community (Grand Ballroom C/W)
The Gut Microbiome and Gastrointestinal (GI) Symptoms and FOP Ed Hsiao, MD, PhD, University of California, San Francisco (UCSF)
Off-Label Use of Medications and FOP Mona Al Mukaddam, MD, MS, University of Pennsylvania
Dermatological and Dental Issues and FOP Clive Friedman, BDS, Certificate in Pedodontics, Diplomate, American Board of Pediatric Dentistry, Shulich School of Medicine and Dentistry Patricia Delai, MD, Hospital Israelita Albert Einstein
Questions and Answers Clive Friedman, BDS, Certificate in Pedodontics, Diplomate, American Board of Pediatric Dentistry, Shulich School of Medicine and Dentistry Ed Hsiao, MD, PhD, University of California, San Francisco (UCSF) Fred Kaplan, MD, University of Pennsylvania Mona Al Mukaddam, MD, MS, University of Pennsylvania Robert Pignolo, MD, PhD, Mayo Clinic
11 to 11:30 am Break and Time to Connect (Grand Ballroom Foyer)
11:30 am to 12:30 pm FOP Community Panel (Grand Ballroom C/W)
FOP Community Members
Emma Albee
Joe Hollywood
Alexandra Rodriguez
Trish Wheelock
12:30 to 1:30 pm Lunch (Garden Court)
1:15 to 6 pm Fun Zone / Teen Zone sponsored by Ipsen (Bloomington and Edina)
1:30 to 6 pm Small Group Meetings
*These sessions are only open to individuals with FOP and their families.
Adult Men Workshop Intensive (Veranda 7 & 8)
Adult Women Workshop Intensive (Veranda 5 & 6)
Dads Mini-Retreat (Veranda 3 & 4)
Moms Mini-Retreat (Veranda 1 & 2)
Other Family Members & Support Caregivers (Garden Court)
Teen Workshop (Edina)
6:30 pm Evening Dinner and Music (Grand Ballroom C/W)
7:30 pm Rec Room Opens for Arts and Crafts (Veranda 5 & 6)
SATURDAY, NOVEMBER 15
7:30 to 9 am Breakfast and Time to Connect (Grand Ballroom C/W)
8:45 am to 12:30 pm Fun Zone / Teen Zone sponsored by Ipsen (Bloomington and Edina)
9 to 9:05 am Welcome Back (Grand Ballroom C/W)
Hope Newport, IFOPA
9:10 to 10:40 am Spinal and Chest Wall Challenges in FOP: Expert Medical and Surgical Insights (Grand Ballroom C/W)
Fred Kaplan, MD, University of Pennsylvania
Robert Pignolo, MD, PhD, Mayo Clinic
Paul Sponseller, MD, Johns Hopkins School of Medicine
10:40 to 11:10 am Break and Time to Connect
11:10 to 12 pm A Closer Look at the OPTIMA Trial Press Release (Grand Ballroom C/W)
Richard Keen, BSc, PhD, FRCP, The Royal National Orthopaedic Hospital
Michelle Davis, IFOPA
12 to 12:30 pm Resilient as Always—Advocating for FOP Through Story (Grand Ballroom C/W)
Dean Wang, Student and Author, Harvard University
12:30 to 1:15 pm Lunch (Grand Ballroom C/W)
1 pm to 5:15 pm Fun Zone / Teen Zone sponsored by Ipsen (Bloomington and Edina)
1:15 to 2 pm Community Learnings and Identified Needs: Findings from the Health Insurance Literacy and Burden of Access Survey (Grand Ballroom C/W)
Patti Engel, RN, BSN, Engage Health
Hope Newport, IFOPA
2 to 4 pm Rotating Workshops
Lymphatic Drainage for FOP-Related Pain & Swelling/Inflammation: A Collaborative Approach (Veranda 1 & 2)
Networking for Success: Building Your Circle of Support (Veranda 3 & 4)
Drug Discovery Showdown: Test Your Knowledge (Veranda 5 & 6)
4:15 to 5 pm Workshops by Stage/Phase of Life with FOP (See workshop descriptions on page 7)
Pediatric/School-Aged Resources (Veranda 1 & 2)
Adult Resources (Veranda 3 & 4)
6 pm Dinner and Goodbyes (Garden Court)
7 pm Rec Room Opens for Arts and Crafts (Veranda 7 & 8)
THANK YOU TO OUR VISIONARY SPONSOR
Registration/Check-in Location
