For the ALS community, access to resources to better understand the disease and the importance of multidisciplinary care to treat people living with ALS is critical. Health disparities in underserved and rural communities present serious challenges for those living with the disease. Like many of our local chapters around the country, The ALS Association Central and Southern Ohio Chapter is working to change that.
In the fall of 2019, Michelle Edwardson, Director of Care Services for the chapter, began working with the team at one of their Certified Centers of Excellence, OhioHealth ALS Clinic, to develop a one-day comprehensive educational symposium for people living with ALS, their caregivers and medical professionals. They had ambitious plans for caregiver boot camps and specialized sessions for patients as well as medical specialists. Unfortunately, the COVID pandemic hit and changed everything.
Determined not to let the pandemic get in the way of this important event, Michelle worked with the clinic’s occupational therapist, Jennie Thompson, to find a way to make it happen anyway. Since in-person events would not be an option, they decided to turn their symposium into a virtual day of ALS education specifically for medical professionals.
Meeting the critical need for ALS education and awareness in the medical community across the rural areas of Ohio became their focus. “In rural areas throughout our state, we see a lot of patients who are receiving incorrect treatments and procedures from outpatient providers simply because they don’t understand ALS,” said Michelle. “When the pandemic hit, the OhioHealth ALS Clinic set up telehealth on a massive scale so they could continue treating their patients. With the infrastructure they had in place, it became the ideal scenario for us to use their technology for our symposium.”
With their new goals in place, the team was determined to do everything possible to deliver a valuable experience to all who would attend. “Jennie was amazing,” said Michelle. “She dove right in and really took over organizing everything.” Jennie set the agenda, organized and prepared all the speakers, worked with the technology department to set up the platform and arranged for professional continuing education units (CEUs) for participants, a tremendous bonus to attract their intended audience. “Jennie works part time, but during this time she easily put in full time hours and then some to make this a great event for the ALS community.”
The team expected to have 50 or so medical professionals in attendance, later becoming elated when over 200 people registered and participated from all over Ohio as well as some from Indiana and West Virginia. “This event provided us with an amazing opportunity to expand our outreach to medical professionals, particularly in the rural communities where they were unaware of the type of multidisciplinary care needed to help people living with ALS and their families,” said Michelle. “And it would not have been possible without Jennie and the incredible work she did to make this happen.”
Special thanks to The ALS Association Central and Southern Ohio Chapter and Jennie Thompson from OhioHealth ALS Clinic for allowing us to share their story.