For many years, Cure SMA, formerly known as Families of SMA, has organized an annual conference that brings together members of the SMA community from around the globe to learn and connect with each other. Given the current situation, most people were not surprised to receive an announcement that the 2020 conference, scheduled for Disney World, would be canceled. But the news was soon followed by an exciting announcement that the entire event would be held virtually, and it would be free!
The conference has never taken place in this manner, and I was eager to discover what it would be like. How would it compare to the in-person conference? Would webinars be easy to access? How would people gather for social activities?
Before long, the first-ever Virtual SMA Conference was in full swing, and I was taking in the answers to my questions. My week was quickly filled with webinars about a variety of different SMA-related topics. And they were indeed easy to access.
Links to each event that I signed up for were sent to my email, so I could listen to them on my tablet at their appointed times. Recordings of these webinars are now available on YouTube for anyone who missed the original broadcasts.
My mom and I both enjoyed listening to tips and humorous stories from popular disability advocates Shane Burcaw and his fiancée, Hannah Aylward. We were also big fans of a presentation by child and family psychologist Albert Freedman, in which he shared some of the lessons he’s learned over the past 25 years as a result of having a son with SMA. Freedman often has been a source of wisdom and guidance for our family during our own SMA journey.
I also decided to join one of the adult socials that was offered. I’ve attended several of these types of socials during in-person conferences. This one took place on Zoom. My mom helped me set up a table in my room so I would have a quiet place to join the call. She also helped me adjust my lamp to ensure that I would have perfect lighting.
Everyone who signed up spent the evening visiting different break rooms filled with other adults impacted by SMA. Each room had designated moderators to help facilitate introductions and encourage conversation. One of my fellow columnists, Kevin Schaefer, served as a moderator.
The social was a great success. I had a wonderful time catching up with friends and meeting new ones. I had such a great time that I immediately signed up for an identical event on another night when I would be available to join again.
Over the two nights, I connected with other members of this fabulous community. We laughed together, learned from one another, and shared stories about our lives and experiences. We discussed a wide range of topics including careers, education, pets, and adaptive sports. I even met a young lady who visited my home town for a power soccer tournament at Turnstone, a local organization where I am a client and a volunteer. I’m looking forward to getting to know my new friends better, and we are all hopeful that these online gatherings will continue in the future.
This platform is accessible and easy for us to use. Some of us spoke out loud while others had the option of typing responses in the chat to communicate. This option is not always readily available during face-to-face interactions.
My family and I had not planned on attending the in-person conference this year, so we were glad to have the opportunity to participate virtually. We have fond memories of our travels to this event in past years. We’ve been blessed to explore fun locations such as Schaumburg, Illinois, Disney World, and Washington, D.C., while we spent time interacting face-to-face with other SMA families.
I know many people were excited to have similar experiences this summer. While attending the conference in the usual fashion wasn’t an option this year, we were given a unique, new opportunity to come together. Having a virtual conference also provided an opportunity for people who normally can’t participate.
I hope this type of event will be held again in the future in addition to the normal conference that we all love.
Did you attend any portion of the 2020 Virtual SMA Conference? What did you think of it? Please share in the comments below.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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