What it means to “Light the Path” in the FOP community2025 marks our 10th meeting since the IFOPA shifted from holding symposiums (joint meetings between researchers, doctors and families) to Family Gatherings that move around the United States. As we look to celebrate the past 10 years and this fall's approaching Gathering, we are excited to share highlights from our conversations with Family Gathering Planning Committee members who shared their own interpretation of this year's theme, and what attendees can expect from the meeting in Minneapolis, Minneapolis. |
As we travel to the North Star State, we are excited to embrace how light embodies the FOP community spirit and guides us all through the winding path of life with FOP. Even when the journey is unclear, light (and our community's shared mission and work) provides steady progress, paving the way forward in research, advocacy, and care-related efforts.
As we have learned from one another throughout the years, there are many ways to perceive and highlight the sharing of experience and insights across the FOP community. Similarly, there is no shortage of ways to define what “finding strength” means for our community right now.
Leading up to 2025 Family Gathering, we asked Planning Committee members to provide their definition of “Lighting the Path: Finding Strength in Every Journey.” We also asked them what our national audience should look forward to during the November meeting. Our featured committee members include:
- Kristi Gonzales, mom to AJ, a teen living with FOP
- Larry Bailin, husband to Adrienne, living with FOP
- Priya Saravanakumaran, a young adult living with FOP
What does the theme "Lighting the Path: Finding Strength in Every Journey" mean to you?
Kristi: Lighting the Path symbolizes the guidance, love, hope, and advocacy we provide for AJ and others in the our community. It speaks to the way we illuminate hope, understanding, and resilience, even in uncertain times. "Finding Strength in Every Journey" acknowledges the challenges we all face, but also the incredible strength we all discover along the way. It's a reminder that even in the hardest moments, there is light, love, and support to keep moving forward.
Priya: "Lighting the Path: Finding Strength in Every Journey” is all about being tough and growing stronger, no matter what life throws our way. It’s about realizing that every experience, good or bad, helps us become who we are.
The “lighting the path” part means that even when things are dark or confusing, we can still find our way forward. It’s not just about having someone guide us, but also about listening to our own inner wisdom and figuring things out on our own. It reminds us that we often find our direction and purpose by taking small steps, learning as we go. Sometimes, that light comes from within—our values, our beliefs, our determination. Other times, it comes from the people around us, like our friends, family, or mentors, who help us figure out what to do next.
“Finding strength in every journey” really speaks to me because it means that challenges aren’t just obstacles, but also chances to learn and grow. It’s in those tough times that we often discover things we didn’t know we had. It’s about realizing that setbacks are like stepping stones, and that every time we overcome something, we build a stronger, more resilient person inside. This strength isn’t just about being tough; it’s also about being adaptable, understanding others, and being able to learn and change. It’s about knowing that our journeys are unique, and every twist and turn adds to our story of strength.
In the end, this theme is really hopeful. It means that even when the path ahead looks dark, we can still light it, and that every step we take, no matter how it turns out, helps us become stronger, more resilient people.
What do you hope attendees and participants take away from the 2025 FOP Family Gathering?
Larry: HOPE! I want people to see that there's always hope. Whether it's something you see now or in the future. Seeing the people who are there to support you, especially Dr. Kaplan and the other dedicated healthcare professionals who make it a priority to attend this event, means so much. I'm particularly excited for the talk on health insurance access and literacy, so that people will be able to see what some of the pathways are to navigate the bigger challenges that occur there.
While we all may have frustrations that FOP is a part of our journey and about the way it impacts our day-to-day life, there is still hope and that is something to hold on to.
Priya: My biggest dream for the 2025 FOP Family Gathering is that everyone who comes and participates leaves feeling more connected, more informed, and super empowered.
First off, I want people to feel a deep sense of community and belonging. For families living with FOP, it can sometimes feel like they’re on their own. This Gathering is a special chance to be around others who truly understand the ups and downs of this journey. I hope they make new friends, reconnect with old ones, and feel the strength that comes from being part of a supportive group. It’s about realizing that they’re not alone in this.
Secondly, I hope everyone learns something new and gets some practical tips. With all the amazing research and care happening, I want attendees to leave feeling educated and ready with the latest info. Whether it’s about managing symptoms, going through clinical trials, understanding genetic research, or finding resources, I want them to feel more confident in talking to their doctors or taking care of themselves or their loved ones. This Gathering is a great place to learn directly from experts and from each other’s experiences.
Finally, and probably most importantly, I hope everyone leaves feeling more hopeful and strong. The theme “Lighting the Path: Finding Strength in Every Journey” really captures this. I want people and families to recognize how strong they are and to be inspired by the strength of our community. I hope they feel energized, knowing that there’s a global effort to find treatments and a cure, and that their participation in this community makes a real difference. It’s about finding that inner light to guide them forward, and that we’re all in this together.
In the end, I want everyone to leave the 2025 FOP Family Gathering feeling uplifted, encouraged, and ready to face their own unique paths with renewed courage and the knowledge that a compassionate and dedicated community is there for them.
