Global Connections to Create a World Free of ALS

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Andrea Pauls Backman, CEO, and member of the Board of Directors of the International Alliance of ALS/MND Associations

Every December for the last 31 years, the ALS/MND community has gathered in various locations across the globe to share new findings from researchers, allied health professionals, patient advocates and most importantly, people living with ALS/MND. (In certain countries, ALS is referred to as Motor Neurone Disease, hence the term “MND”).

This year was no different, except we met virtually on multiple days at often interesting hours of the day and night. In fact, this was a record gathering with 1,800 people from 48 countries attending the culmination of the multiday conference, the International Symposium on ALS/MND. You can read more about the symposium presentations here: https://mndresearch.blog/

Having attended and presented at these meetings for several years, I greatly missed seeing my global colleagues in person but, I as closed my computer on the last day, I felt a tremendous sense of confidence, solidarity and hope in our mission.

What brought me hope? Here are a few takeaways from the conference:

  • The invaluable benefits from working side by side with people living with ALS as we solve this disease together.
  • A staggering number of therapies offered by existing and new pharma groups are in early-stage clinical trials
  • The critical role of basic scientific research in developing these therapies – exactly the type of research the Les Turner ALS Foundation has funded continuously since 1979
  • The need to validate biomarkers (physical findings that show changes in response to treatment) to find treatable targets for this complex disease
  • An astounding array of new technologies to keep people living with ALS more easily connected to their families and friends and the great need to improve access to these technologies
  • Dramatic changes in clinical care improving the quality and length of life for people with ALS
  • Benefits from the global COVID-19 pandemic: expanded care through telehealth visits, virtual support and learning from those already living in isolation with ALS
  • The solidarity that comes from knowing no matter where we are from or what our native language is, we all want the same access to treatment and cure for this disease.

As one of the founding organizations of the International Alliance of ALS/MND Associations, we’ve never doubted the value of connecting not only for a few days each year, but all year round. This is how we will create a world free of ALS/MND.

Together toward a cure,

Andrea Pauls Backman, Chief Executive Officer