Re-igniting my passion

by Allison Calder, Salt Lake City, Utah

This year, the Volunteer Leadership Summit came at just the right time for me. I had hit a slump as a chapter leader, a role I had taken on back in 2019. Like most of the world, I was defeated by the idea of trying to plan in-person events that would probably be canceled or changed last minute to “virtual.” I was tired of making efforts to grow a chapter only to be met by lack-luster engagement and attendance. I was losing sight of my goals and capacity.

To be candid, I told my husband a few weeks before attending that this would probably be the last year I would be involved in this capacity. I had a lot going on already and didn’t feel I was making the difference I wanted to. With these feelings, as well as a negative Covid test, vaccines and a mask, I jumped on a plane to Chicago.

Before we hit the lunchtime break Saturday morning, many of my concerns had already been addressed. I began to catch the vision again–the reason I volunteered to be a chapter director in the first place. A big part of that was remembering our overarching goal: Treatments by 2025.

Jamshid Arjomand, chief science officer, really put it into perspective when he showed us the scientific updates and how our FSH community is becoming more ready for clinical trials. With several treatments under investigation, he told us how “we’re taking as many shots on goal as possible.” He reinforced the importance of becoming “trial ready” and how each of us can play a part in that effort.

Another big clincher for me was when Leigh Reynolds introduced her topic, “Discovering Your Strengths.” She helped us see how our strengths can contribute to the FSHD Society in a variety of ways via education, fundraising, advocacy, support, and fun. While doing some personality profiling and answering questions about our preferences, Christie (NorthEast Florida), Dana (San Diego) and I joked, “Who would ever pick that?”–about different choices–illustrating how unique each local leader is.

Being surrounded by a group of driven, successful, kind, and creative volunteer leaders was incredibly uplifting. I gleaned many insights from other leaders across North America (go Carrie & Steve in Canada!). Selina Lai of the Pacific Northwest shared how effective it had been when they called members of their chapter. Rachel Sartin of Central Texas helped me when she suggested we ask ourselves, “What needs to be local and what can be more broad?” Each attendee was able to contribute their unique perspective.

After a fantastic weekend of inspiration, tips, exciting updates, and brainstorming, I’m fired up to make 2022 a great year with the Society. I have great aspirations to help more patients and caregivers in Utah connect with one another. I hope to share the importance of joining the registry so we can be trial-ready as soon as treatments advance. I want to “Ignite!” like our 2022 theme says. So while I’m still far too busy with 5 young kids, a business, the school PTA, church volunteering, and life in general, there’s still time to fight for something I am so passionate about, because I’m not in this fight alone.