HDC Partners with Team Gleason for ALS Conference: Follow-up

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In partnership with Team Gleason, the Human Development Center hosted a conference addressing communication strategies for people with Amyotrophic Lateral Sclerosis (ALS). The two-day conference called ALS, Communication and All That Jazz took place June 9 and 10, 2017, at the LSU Health New Orleans’ Human Development Center, 411 South Prieur Street. About 120 people were in attendance in what is hoped to be the first annual conference.  The feedback from the participants was overwhelming positive:

• “Wonderful conference.”  “Fantastic.”  “All speakers were amazing!” “Great conference, very worthwhile.” “Please make it annual.”
• “One of the best conferences I have ever attended for ALS. All speakers were very knowledgeable and engaging.”
• “This conference was an excellent value for the speakers and CEUs provided. Thank you so much for initiating it. I would definitely return!”
• “The pALS panel was very powerful and an eye-opening look into life with ALS for the individual as well as their care-takers.”
• “Seeing ALS patients for the first time reminded me why I am doing the research I’m doing.”
• “Excellent. Thank you for this affordable, content-rich opportunity.”

During the conference, national experts addressed subjects including no-tech, low-tech and high-tech augmentative communication strategies, pro-active message banking, strategies to enhance speech clarity, voice banking, partner-assisted scanning and laser pointer with low-tech boards, assessment and feature matching for speech-generating technology, successful use of computer/AAC device strategies, as well as environmental controls and home automation systems for all budgets. Attendees also participated in a hands-on demo and practice with communication technologies. The presenters included John Costello and Peggy Dellea from Boston Children’s Hospital, Lisa Bardach from ALS of Michigan, and Team Gleason’s Austin Edenfield. The highlight of the conference was a panel discussion with six people with ALS (pALS) and their primary caregivers (cALS) who offered their insights on communication strategies. Links to the agenda and associated presentations, handouts and videos can be found here.