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

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by Mary Chapman |

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Global Day 2020

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.