A Blog post by Karen Kirchhoff, IFOPA’s Family Services Coordinator
The IFOPA Family Gathering is typically the last big event of the year for our staff, followed by finishing up any loose ends and planning and budgeting for the upcoming year. This year, however, I was pleasantly surprised to find out that FOP India was having their first-ever Family Meeting on December 12-13 and the IFOPA and Ability Toolbox program were invited to participate!
Sunil Ladwa, father of a young woman with FOP and leader of FOP India, and Dr. Vrisha Madhuri, Senior Professor of Paediatric Orthopaedics at the Christian Medical College Hospital and member of the International Clinical Council on FOP, sent me a tentative agenda. I quickly began ordering tools, creating presentations and getting a few not-so-fun immunizations. In just a few short weeks after the FOP Drug Development Forum in Dallas, I was off to Vellore, India boarding three different flights for my 26-hour journey.
The hustle and bustle of the people and traffic of India fed my excitement as I made my way to the venue with Sunil on the first day. I had two large suitcases and one carry-on case filled to capacity with tools, adaptive clothes, brochures, handouts and giveaways that I quickly laid out as families began arriving.
There were approximately 18 FOP families represented at the meeting. Nine children attended in person with their parents, siblings and other family members. Another 8-10 individuals with FOP and their families attended online.
Sunil and Dr. Madhuri started the event with welcoming remarks and introductions before diving into the latest information about FOP care, research and clinical trials. I had prepared three presentations for the day: “Overview of IFOPA Programs and Services,” “Jobs Held by FOP Community Members Around the World” and an interactive workshop on how to make homemade tools out of everyday items. Families were then able to make a tool with me at the end of the session which turned out to be a great “icebreaker” and a lot of fun!
In-person events are what I look forward to the most in my role as Family Services Coordinator. They always re-ignite my energy and passion for supporting families with FOP. This meeting in India was especially impactful since it was the first time these families were meeting other families with FOP in person. The shyness that was obvious at the beginning of the meeting seemed to melt away as the day progressed and meaningful connections were made. By the end of the day, there were hugs, tears (mostly on my part), exchanges of WhatsApp numbers and the mention of future FOP India Zoom meetings that Sunil plans to hold regularly so the group can continue to stay connected.
Day two of the FOP India meeting brought me to Vellore Christian Medical College Hospital with Dr. Madhuri. I was in a room next door to Dr. Madhuri so that I could spend additional time with each family after they saw her for their FOP clinic appointment. This slower-paced day was a blessing after the energy-packed day we experienced the day before! I used this time to learn their names, talk with them one-on-one, demonstrate the spirometer and adaptive tools the IFOPA was sending home with them, and answer specific questions and concerns they had for their child or family member with FOP. This was an invaluable opportunity to learn about what it is like to live with FOP in India. They helped me to better understand the difficulties they experience with very little access to adaptive equipment, financial assistance and the burden of travel to specialists (or the challenge of not having specialists where they live).
I was also thrilled to make connections with a Social Worker and an Occupational Therapist at the hospital so that moving forward the three of us and Sunil of FOP India can collaborate on helping families hopefully find the resources and equipment they need more easily.
I was incredibly overjoyed to be a part of the two-day event and felt honored to share both days’ experiences with my new friends in India. I would like to say congratulations to Sunil and Dr. Madhuri for a wonderful first meeting and to thank you for including the IFOPA and Ability Toolbox in your programming. It is an experience I won’t forget, and I look forward to staying connected and potentially seeing you at a future meeting with even more families from other parts of India (along with more yummy spicy foods)!
Thank you also to those of you that support the IFOPA’s programs and services. You make it possible for us to attend meetings such as this and bring tools to share with these families. It’s incredibly valuable to learn, educate and connect with our larger international family. Despite being a lesser-known rare disease, FOP has an incredibly strong community that is welcoming and supportive. These international family meetings make the world feel a bit smaller.