Global Day 2020 Calls Attention to ALS and Need for Better Care

Global Day 2020 Calls Attention to ALS and Need for Better Care
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Each June 21 marks Global Day 2020, 24 hours set aside to heighten awareness of amyotrophic lateral sclerosis (ALS) and to raise money to fight it.

Ample ways exist to participate in the worldwide event that’s coordinated by the International Alliance of ALS/MND Associations, whose member organizations represent more than 35 countries.

Known in some regions as motor neurone disease (MND), ALS affects every nation — about 1 in every 50,000 people annually.

“ALS/MND is a global problem,” the organization states on the Global Day webpage. “It does not discriminate on the basis of race, ethnicity, socioeconomic status, or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.”

There are several ways to show support not only for greater disease awareness, but also for the search for effective treatments and, ultimately, a cure. The Alliance encourages a robust social media presence, and use of the hashtag #ALSMNDWithoutBorders when sharing information or activities.

The organization also asks the ALS community to use the day to celebrate international partnerships and collaborations that promote unity in the global fight against this progressive neurodegenerative disorder.

Supporters are also encouraged to advocate for the community by widely sharing an Alliance document called The Fundamental Rights of People with ALS/MND Worldwide. Revised last year, the position statement represents the set of rights that the Alliance hopes all member organizations will adopt and promote. The first “right” in the document is patient access to the highest quality care and treatment available.

Another suggestion is holding a virtual fundraiser for local ALS/MND associations. Ideas from various “awareness day” events that might be helpful here as well include setting up an online fundraising page, livestreaming events, hosting individual local runs or walks, “bikeathons” on either outdoor bicycles or personal exercise bikes, individual hikes in local areas, online auctions, virtual tours, Netflix parties, virtual concerts, and virtual happy hours.

Go here to find a local member association, and here for social media posts from patients and families around the  world.

Follow the Alliance on Twitter for updated events, and share what’s being done locally to raise funds and awareness.

“June 21 is a solstice — a turning point — and each year the ALS/MND community undertakes a range of activities to express their hope that this day will be another turning point in the search for [the] cause, treatment, and cure of ALS/MND,” the organization states.

For further information about getting involved in this year’s Global Day, contact the Alliance Coordinator here.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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