The Good, the Better, and the Best of This Year’s ASF Family Conference

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by Sabrina Johnson |

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ASF Conference \ Angelman Syndrome News \ An assortment of goodies from a previous ASF Walk, including a handbag and various informative booklets

Sabrina L. Johnson

The Angelman Syndrome Foundation (ASF) is a bedrock for both families who are newly diagnosed and those continuing their journey with Angelman syndrome (AS). Every other year, ASF hosts a conference to bring together experts, doctors, and families in the AS community.

Our daughter Juliana is 11, and we have been living with Angelman syndrome for nine years. However, there is still so much to learn about this rare neuro-genetic disorder. It’s so important for AS families to stay abreast of new developments, meet others in the AS community, and gain insights to make our daily living just a little bit easier.

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It’s good when the conference is in your city

Unlike the annual ASF Walk, the conference is held in only one location, and my family has never been able to attend. Each year, I would eagerly await the announcement of the next conference site.

ASF conference \ Angelman Syndrome News \ The Johnson family poses for a happy photo during the 2018 ASF Walk in Atlanta

The ASF Walk takes place in multiple cities on the same day. From left, the Johnson family, Jessa, Lamar, Sabrina, and Juliana, attend the 2018 Atlanta event. (Photo by Sabrina L. Johnson)

I had always hoped it would land in the Atlanta area, and finally, I got my wish — sort of. This year’s conference was held online, and I had a front-row seat.

Watching is better when you need to tackle stuff

We haven’t attended the conference in the past because August usually is filled with family events. My 10-year-old daughter, Jessa, celebrates her birthday at conference time. It’s also back-to-school time for both of my girls and me, as I’m a teacher.

This year, I was over the moon that I could manage all of our regular activities and attend the conference at night. Conference planners realized that a daytime conference wouldn’t be convenient.

Additionally, conference sessions started at 8 p.m., which provided plenty of wiggle room for me to get dinner ready and get the girls settled for the evening.

During the Saturday session, I watched via Zoom while I did chores and other weekend tasks. I know some things can’t replace face-to-face interactions, but I liked being able to work while still participating.

When the best is paraded before you

I attended as many sessions as my schedule would allow. Some of the presenters were new to me, but I knew several others from our visits to the Angelman syndrome clinic. I am always in awe of the commitment that these professionals make to the AS community.

AS is still relatively new in terms of data and years. So, the research and expertise that these professionals provide are invaluable. I enjoy every opportunity I get to hear information from our authorities on AS. It is a welcome change from providers who don’t understand all the little nuances of AS.

Perhaps the best part of the conference is that the information is still available for those who missed it. With presentations covering everything from seizures and diets to financial planning, the conference is a gift that keeps on giving.

Session recordings are on the ASF website, and each is 100% free!

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Note: Angelman Syndrome News 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 Angelman Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.

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