Stories from our 2024 Volunteer Leadership Summit
In early February, 75 of our Volunteer Leaders from across the US and Canada met in-person at the Chicago Airport Hilton or virtually over Zoom for two days of intensive learning, heartfelt camaraderie, collaboration, and a little bit of fun.
The theme unfolded with our keynote speaker, patient and advocate Jeff Johnston. He talked about the idea of a “tipping point,” and said, “It’s the little things that actually do add up to make a huge impact.”
Each volunteer leader, acting one person at a time, one connection at a time, is setting in motion a ripple that can build into an enormous wave. Here are some of their stories.
Amy Bekier, San Diego chapter director
From my perspective as a volunteer leader, the FSHD Society’s Volunteer Leadership Summit is one of the most important gatherings of the year. It offers the warmth and camaraderie of like-minded people gathering and sharing experiences, and the wisdom of the “hive.”
Most of us belonging to this hive either have FSHD or have a loved one with the disease. Life is a challenge, and as the year flies by, it’s easy to let up on the throttle. The Summit is our recharging station. Knowing and feeling the sense of belonging and enthusiasm of this elite group, knowing you are supported, knowing you are not alone, and knowing that what you do as a leader makes a difference – it means everything.
The Summit provides tools and insights for working smarter, not harder. If you want to help lead us into a future where FSHD is conquered, I encourage you to take on a volunteer leadership role and attend this Summit.
Mark Christman, Western PA chapter director
In his opening remarks, Jack Gerblick, the Atlanta Chapter director and chair of the FSHD Society board’s Community Engagement Committee, said the goal of the Volunteer Leadership Summit is to learn, share some stories, laugh, and strengthen our committed volunteer leader community. Mission accomplished.
Jeff Johnston, who delivered the keynote address, taught me the benefits of connecting with connectors and finding the most valuable people in our networks. Connectors love to share contacts and can open doors and put us in touch with the right people at the right time.
The people I met and the personal stories they shared at the Volunteer Leadership Summit made me laugh and cry.
I laughed when Mary Mauch, one of Chicagoland’s Walk & Roll co-leaders, showed off her FSHD orange slice tattoo. The orange slice represents the loss of the ability to smile, a symptom many people with FSHD experience.
I cried when Jack Gerblick shared his vision of a future where a child with early-onset FSHD tells her parents she can brush her hair by herself or is able to walk down the aisle at her wedding.
I connected with Gary Lauck, the Virginia Chapter co-director and Walk & Roll co-leader, who sat next to me at dinner Saturday evening. Gary told me about his 30-year career as a Navy pilot before being diagnosed with FSHD a few weeks shy of his retirement. He also told me about the anxiety he feels for his teenage daughter, who also has FSHD.
Gary mentioned a sentiment I share with him: Almost everyone we meet in the FSHD community is a wonderful person.
All this learning, sharing, laughing, crying, and connecting strengthened my commitment to the FSHD community. I came away with new goals and resources in my volunteer toolbox for the coming year.
James Rice, Los Angeles Chapter director
I had the privilege to virtually attend this year’s Volunteer Leadership Summit. This is the third summit that I’ve attended, and they’ve always been a great opportunity to hear other volunteers’ perspectives across the country.
I always enjoy hearing and discussing the lessons learned from the previous year of volunteer-led fundraising events. It’s an opportunity for us all to grow and make our volunteer work as successful (and fun!) as it can be.
The summit is also an amazing way to rally and refocus for this coming year. I look forward to another successful year of volunteer-driven events as we push for a cure.
Tara Hill, North Texas Walk & Roll leader
This is the second time I’ve been able to attend the Volunteer Leadership Summit. Both experiences were fantastic.
As handy as it is to hop on Zoom, having the chance to sit in a room with other Walk & Roll leaders and chapter directors is invaluable to me as a volunteer. Not only are we able to swap tips and tricks but also share our struggles and celebrate our wins. We’re able to remind ourselves and each other why this work is so important: Every step of a Walk & Roll, every connection with a new member, is a step toward a world without FSHD.
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