A Weekend at the National Limb Girdle Muscular Dystrophy Conference

Three weeks ago (time flies!), I had the opportunity to attend the first-ever Limb-Girdle Muscular Dystrophy conference, which took place in Chicago over Labor Day weekend. Although everyone who attended the conference had to contend with the logistical challenges of traveling over a holiday weekend, it was well worth the frustration and hassle.

This was an opportunity too good to pass up.

The idea of having a conference for all limb-girdle patients, regardless of one’s subtype, is not a new one. There are Facebook groups with thousands of members where limb-girdle patients of all subtypes communicate with one another and share advice and experiences. Many are good friends, but have never had the chance to meet in person. Until this year, there has never been an opportunity to bring all these different patients together, under one roof, for any length of time.

In previous years, there have been smaller conferences geared towards specific limb-girdle subtypes (such as for my own subtype, LGMD2B), but never one that brought the entire limb-girdle community together. There are many reasons for this, but it mostly came down to feasibility.

Additionally, the research and treatment landscape was, to put it kindly, slow-moving. But now there is unquestioned momentum. More patients are receiving a genetic confirmation of their subtype of LGMD than ever before. And although there are no FDA-approved treatments, there are clinical trials that have started or will start in the near future.

The time was finally right to bring us all together.

I first learned about the conference last year, through informal channels. As my family packed our van to make the drive out to Chicago, it finally hit me: this is really happening. It takes a special reason to drive halfway across the country over Labor Day weekend, but this conference certainly qualified.

The drive was uneventful, but long. I had never been to Ohio or Indiana, so it was nice to cross those states off the list. We could have done the drive in two days, but decided to make it a three-day trip so that we’d be rested in time for the welcome reception that Friday night. Even then, I was exhausted and struggled to be social. (Although it can be argued that I always struggle to be social. But that’s a topic for another day.)

Just a terrible, awful hotel room view.

Despite my introverted nature, I was looking forward to connecting with my fellow LGMD-ers. I was eager to see friends that I had met previously, but I was also excited to meet others I had never met before, or who I only knew through infrequent social media interactions.

But above all, I was most looking forward to something that didn’t even involve me: the experience everyone else would have at the conference. I have been helped so much by meeting other patients with 2B, and the nonprofit organizations and researchers who work tirelessly on our behalf. They provided a support system for me that changed the direction of my life.

I knew that this conference had the potential to be the turning point for many people, whether patient or caregiver.

And let’s not forget about those caregivers. Family members were encouraged to attend, as the networking opportunities and resources would be just as valuable to them.

I know my parents looked forward to attending. My dad went with me to the LGMD2B patient conference in 2016 and had a great time, but my mom was unable to attend. This would be her first patient conference, and I was excited to think about how much she’d enjoy it and bond with other mothers.

The conference started informally on Friday night and concluded late afternoon on Sunday. My only gripe was that it went by so fast! Two days were over in the blink of an eye. But that is a testament to how well-run it was, with engaging, relevant content and ample time to network with other patients and LGMD stakeholders.

Rather than do a session-by-session recap of the conference, if you are interested in learning more, I encourage you to visit the conference website, which you can find here. Over the course of the next few weeks and months, videos of the different sessions will be uploaded for those who were unable to attend.

Dr. Jerry Mendell receiving the Lifetime Achievement Award.

The conference alternated between patient-driven panels and research-intensive presentations, which kept attendees engaged late into the day. The patient panels were simultaneous breakout sessions on topics geared towards different subsets of the audience, such as travel, parenting and what it’s like to participate in a clinical trial.

There was also a young adult session, which was by far the best panel of the conference. (Okay, I am biased. I was a panelist. I am just glad that I still qualify as a young adult.)

The research sessions, although more academic in nature, were still enlightening. Scientific information was presented in a way that was approachable to non-scientists without being oversimplified. Although I work in the neuromuscular space, I still learned a great deal about the science of limb-girdle, and what therapeutic interventions are being explored in the lab and the clinic. Unfortunately, there are no cures yet on the horizon, but it was still encouraging to see just how much activity is taking place in the space. It’s nowhere near where we as a community want or need it to be, but it is progress nonetheless.

I am always a big fan of breaks, and one of the strengths of this conference was that no session went more than 90 minutes. Frequent breaks enabled attendees to network with one another, visit the exhibit booths, and relax and recharge before the next session. I’m pretty sure I nodded off at one point. I have been to many conferences with unforgiving schedules, with back-to-back-to-back-to-back sessions that would make even the most energetic person sleepy.Β  One downside of LGMD is that our energy level declines significantly as our strength deteriorates.

This conference was built with the patient in mind, and that is a testament to the patients who helped organize the conference. Many thanks are in order. You can see a picture of the supporters of this conference below, but a special shout-out goes to the organizers, Kathryn Bryant, Brad Williams and Carol Abraham. They are passionate leaders in the limb-girdle community and worked tirelessly to put together a great event. I can’t wait for the next event two years from now. No pressure!

Conference supporters. Photo courtesy of the National Limb Girdle Muscular Dystrophy conference Facebook page.

On Friday, I asked Carol how many people registered for the conference, and she said more than 400 (with more expected to register last-minute). It still boggles my mind, in the best way of course, that so many patients and families made the trek to this conference on a Labor Day weekend. That is no easy feat, even for travelers without mobility issues. And people didn’t just come from Wisconsin or Illinois or Iowa. This was truly an international conference. I met attendees from Italy, France, the UK, even New Zealand. New Zealand! Not to mention people who drove and flew in from all over the US.

If there is one positive that comes with living with LGMD, it is knowing that, no matter where in the world you live, there are others out there who have lived a similar experience as you. No matter your subtype, it is a disease that takes away many abilities, and forces you to change the way you look at life.

The physical symptoms may vary from subtype to subtype, but the emotional toll it takes, for both the individual and the family members caring for them, is the same. All throughout the conference, bonds were formed with complete strangers who knew what it was like to grow up fully able, only to struggle one day going for a run. Who knew what it felt like to experience the first fall, or come to the realization that they needed to get a wheelchair. Spouses and parents connected based off the shared experience of caring for a loved one.

You might have 2J and I might have 2B, but weakness is weakness.

Heartache is heartache.

Hope is hope.

The limb-girdle family. Click on it to zoom. Bonus points for finding me in the picture.

 

3 thoughts on “A Weekend at the National Limb Girdle Muscular Dystrophy Conference

  1. Joshua Thayer

    It was an amazing experience, wasn’t it? And you’re right, time flies by so fast. It feels like yesterday to me. I miss all of my LGMD/caregiver friends, new and old, already and look forward to the next one.

    As always, nicely written piece, Chris! Thanks for encapsulating the experience so well.

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