Produced in collaboration with the International FOP Association (IFOPA), the National Organization for Rare Disorders (NORD), and Rare Bone Disease Alliance
This activity is supported by an independent medical education grant from Regeneron Pharmaceuticals, Inc.
FOP causes abnormal bone formation in muscles and soft tissues in episodic “flare-ups” that lead to replacement of muscle with bone. Early recognition is crucial to preventing trauma and avoiding medical and surgical interventions that trigger flare-ups and worsen patients’ disability and quality of life.
After receiving a diagnosis of FOP, patients, parents, and caregivers are often left anxious about the future. What care and treatment will be needed? How can flare-ups be avoided, and disability progression be slowed? Patients with FOP and their caregivers can struggle with the often long diagnostic journey, complicated steps in prevention and care, and burden of self-advocacy.
For help on this journey, please join us for a 7-part series of short presentations on FOP. You’ll hear from specialists in FOP clinical care, social workers, patient representatives, patients, and caregivers. Each 30-minute program is designed to answer your questions about different aspects of FOP care, methods to avoid unnecessary trauma, and strategies for partnering and communicating with your multidisciplinary care team, including your specialty care providers, primary care provider, and dentist.
Modules 1 and 2 are available to view now:
Click here to register to watch now.
You only need to register once to watch all the modules.
Module 1: We Were Told It Could Be FOP: Now What?
- Features of FOP and presentation (birth and beyond)
- Genetics of FOP and confirmation of diagnosis
- Where to locate FOP specialists
- Where to find support
- What causes FOP flare ups?
- Spinal deformities
Module 2: Managing and Anticipating Flare Ups
- Current management of FOP flare ups
- When to start treating
- Flare-up prophylaxis
- Working with your doctor to always have medication on hand
- Injury prevention: Keeping your loved one safe
Look for these modules later this year:
- Module 3: Communicating Your Needs to Your Health Care Team (Available 6/7/23)
- Module 4: Ongoing Care for People with FOP and Their Families: Nutrition, Occupational, and Respiratory Care (Available 6/7/23)
- Module 5: From Childhood to Adulthood with FOP (Available 7/5/23)
- Module 6: Shared Stories of FOP Families (Available 7/5/23)
A dedicated Q&A session will take place on 8/17/23 . The presentation will explore pressing questions and concerns from patients and caregivers about living with FOP. Click here to submit your questions now.
Speakers
Edward Hsiao, MD, PhD
Karen Kirchhoff, MSPT
Kristi Gonzales
Hope Newport, MA, CCLS
Lara Theoret
Alice Flounoy
Edward Hsiao, MD, PhD
Professor, Division of Endocrinology and Metabolism
University of California, San Francisco Director, UCSF Metabolic Bone Clinic
Edward Hsiao, MD, PhD, is a Full Professor and Director of the UCSF Metabolic Bone Clinic at the University of California, San Francisco, CA. Dr. Hasio’s research is driven by a bedside-to-bench-back to-bedside approach, using clinical observations and patient samples to inspire the research with the long-term goal of improving the care of patients with all types of skeletal disorders including Fibrodysplasia Ossificans Progressiva (FOP). His laboratory uses a combination of human stem cell and mouse models to study how genetics and hormone signaling contributes to the normal formation of key skeletal tissues such as bone, cartilage, muscle, and fat. Furthermore, Dr. Hasio is a site investigator in interventional trials for an experimental compound to block heterotopic ossification in FOP.
Karen Kirchhoff, MSPT
IFOPA Family Services Coordinator, Physical Therapist
Karen Kirchhoff joined IFOPA as Family Services Coordinator in October 2019. She runs the Ability Toolbox program working to empower people with FOP, support their families and caregivers, and educate medical professionals to promote problem-solving and independence. Karen brings a great range of experience to this role with more than 18 years in direct pediatric therapy, parent education and training, coordination of services, and client case management. Karen has a bachelor's degree in education and a master's degree in physical therapy from the University of Kansas. She enjoys helping families in a variety of settings and developing relationships in the FOP community to ensure more access to care and support. Karen is based on the Kansas side of the Kansas City metro area.
Kristi Gonzales
Parent of a child with FOP
Kristi lives in Bellmawr, New Jersey with her husband, Rico and three children: a son, AJ, and two daughters, Alexis and Lillie. At a young age, AJ was diagnosed with FOP; soon after, they created the organization, AJ’s Avengers, to support FOP research. After eighteen years in law, Kristi took a Senior Executive Administrative position at an Insurance Brokerage Firm where she facilitates insurance requirements for clinical research trials. Kristi brings a wide breadth of experience and knowledge from working with rare disease organizations, as well as organizational skills and attention to detail to her board position with the IFOPA. As Kristi states, “I believe hope wins; hope for a cure, hope for a medicine and hope for the future. I hope one day I can tell my son it’s okay to run!”
Hope Newport, MA, CCLS
Family Services Manager
International FOP Association
Hope began her role as the International FOP Association (IFOPA) Family Services Manager in April 2018. She holds a Master's Degree in Human Development and Family Studies from the University of Missouri and is a Certified Child Life Specialist. Hope has over a decade of experience working with families dealing with chronic conditions from her tenure at The Hole in the Wall Gang Camp and the Down Syndrome Guild of Greater Kansas City. During her time at the Camp, Hope developed the CampOut program to provide families with camaraderie and normalizing activities of summer camp. In her current role as Family Services Manager with IFOPA, she collaborates with subject-matter experts and families affected by FOP to create programs, services, and educational opportunities for the FOP community.
Lara Theoret
Parent of child with FOP
Alice Flounoy
Interview Participant, Adult with FOP
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Edward Hsiao, MD, PhD
Professor, Division of Endocrinology and Metabolism
Edward Hsiao, MD, PhD, is a Full Professor and Director of the UCSF Metabolic Bone Clinic at the University of California, San Francisco, CA. Dr. Hasio’s research is driven by a bedside-to-bench-back to-bedside approach, using clinical observations and patient samples to inspire the research with the long-term goal of improving the care of patients with all types of skeletal disorders including Fibrodysplasia Ossificans Progressiva (FOP). His laboratory uses a combination of human stem cell and mouse models to study how genetics and hormone signaling contributes to the normal formation of key skeletal tissues such as bone, cartilage, muscle, and fat. Furthermore, Dr. Hasio is a site investigator in interventional trials for an experimental compound to block heterotopic ossification in FOP.
University of California, San Francisco Director, UCSF Metabolic Bone Clinic -
Karen Kirchhoff, MSPT
IFOPA Family Services Coordinator, Physical Therapist
Karen Kirchhoff joined IFOPA as Family Services Coordinator in October 2019. She runs the Ability Toolbox program working to empower people with FOP, support their families and caregivers, and educate medical professionals to promote problem-solving and independence. Karen brings a great range of experience to this role with more than 18 years in direct pediatric therapy, parent education and training, coordination of services, and client case management. Karen has a bachelor's degree in education and a master's degree in physical therapy from the University of Kansas. She enjoys helping families in a variety of settings and developing relationships in the FOP community to ensure more access to care and support. Karen is based on the Kansas side of the Kansas City metro area. -
Kristi Gonzales
Parent of a child with FOP
Kristi lives in Bellmawr, New Jersey with her husband, Rico and three children: a son, AJ, and two daughters, Alexis and Lillie. At a young age, AJ was diagnosed with FOP; soon after, they created the organization, AJ’s Avengers, to support FOP research. After eighteen years in law, Kristi took a Senior Executive Administrative position at an Insurance Brokerage Firm where she facilitates insurance requirements for clinical research trials. Kristi brings a wide breadth of experience and knowledge from working with rare disease organizations, as well as organizational skills and attention to detail to her board position with the IFOPA. As Kristi states, “I believe hope wins; hope for a cure, hope for a medicine and hope for the future. I hope one day I can tell my son it’s okay to run!” -
Hope Newport, MA, CCLS
Family Services Manager
Hope began her role as the International FOP Association (IFOPA) Family Services Manager in April 2018. She holds a Master's Degree in Human Development and Family Studies from the University of Missouri and is a Certified Child Life Specialist. Hope has over a decade of experience working with families dealing with chronic conditions from her tenure at The Hole in the Wall Gang Camp and the Down Syndrome Guild of Greater Kansas City. During her time at the Camp, Hope developed the CampOut program to provide families with camaraderie and normalizing activities of summer camp. In her current role as Family Services Manager with IFOPA, she collaborates with subject-matter experts and families affected by FOP to create programs, services, and educational opportunities for the FOP community.
International FOP Association -
Lara Theoret
Parent of child with FOP
-
Alice Flounoy
Interview Participant, Adult with FOP
