Answering the call for advocacy during ALS Awareness Month

Nonprofits host events in May to raise profile of neurodegenerative disease

Susie Strachan avatar

by Susie Strachan |

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May marks amyotrophic lateral sclerosis (ALS) awareness month, a time dedicated to raising awareness about ALS and answering the call to support those affected by the neurodegenerative disease.

In the U.S. and internationally, baseball games, conferences, flag raisings, and community events are held during ALS Awareness Month to honor those living with ALS, also known as Lou Gehrig’s disease, and to advocate for improved treatments and better support services.

“Every 90 minutes, every day, every week, month, and year, someone is diagnosed with this disease, and someone else passes away from it. But numbers only tell part of the story,” Donald S. Wood, PhD, president and CEO of the Muscular Dystrophy Association (MDA), said in a press release.

“Behind each statistic is a person, a family, a community fighting for hope. With advancements in research and technology, we are closer than ever to understanding ALS and finding treatments, but we need your help to finish the story,” Wood said.

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MDA asks supporters to answer the call

The MDA kicks off ALS Awareness Month with its Answering the Call campaign that features stories, research updates, and advocacy tools, along with EndALSwithMDA public events during May.

Some of the events include:

  • The MDA Golf Classic, May 2, an annual event happening at the Whirlwind Golf Club, in Arizona
  • The MDA Virtual Learning Series, May 8 and 9, a free event led by industry experts that will provide up-to-date information on care, research advancements, and support for ALS patients and caregivers
  • The MDA Advocacy Institute: ALS Policy Updates, May 15, a free event covering recent policy updates with an impact on the ALS community
  • Drink One for Dane Day, May 17, held in partnership with the Dutch Bros Foundation, a fundraiser in memory of Dutch Bros co-founder Dane Boersma, who died from ALS in 2009.

The MDA will also use the awareness month to share the ALS Educational Initiative, a partnership with the International Association of Fire Fighters that seeks to raise awareness for fire fighters affected by ALS.

Similarly, the nonprofit will continue to promote the National ALS Registry in partnership with the Centers for Disease Control and Prevention. This is the only congressionally mandated and national population-based registry in the U.S. gathering data to help researchers better understand how ALS develops and who is more likely to be affected.

Looking ahead into June, the MDA will host the Wings Over Wall Street gala, June 6, to benefit ALS research and honor members of the ALS community.

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I AM ALS community summit and flag event for awareness month in May

ALS Association brings back Ice Bucket Challenge

The ALS Association is combining a theme of Living With ALS with the 10th anniversary of the Ice Bucket Challenge, a social media campaign first held in the summer of 2014 that saw participants dumping a bucket of ice water over their heads and challenging others to do the same or make a donation to support ALS research and patient care.

“Thanks to the Ice Bucket Challenge, we have been able fund promising ALS research and expand access to high-quality care for people living with ALS, but we have a lot of work to do,” Calaneet Balas, president and CEO of the ALS Association, said in a press release from the organization.

During awareness month, and beyond, the association will highlight the impact of the $115 million raised in 2014, and its ongoing efforts to expand its national network of ALS clinics, funding clinical trials, and supporting people living with ALS. It is also rebooting the challenge and inviting participation.

I Am ALS raises flags, ALS issues

Meanwhile, community-led nonprofit I Am ALS will host the third annual ALS Awareness Month flag display and inaugural community summit in Washington, D.C., from May 29 to June 1.

As in the past two years, the organization will hoist on the National Mall hundreds of flags bearing the names of those living with ALS, those lost to the disease, and gene carriers.

The community summit is a three-day event where advocates and community organizations can discuss the issues facing the ALS community and develop strategies to address these issues.

I Am ALS will also present a webinar about Lou Gehrig on May 6, hosted by the Grayslake Area Public Library in Illinois. Lou Gehrig was an iconic American first baseman who played baseball for the New York Yankees, but his career was cut short due to an ALS diagnosis in 1939.

Lou Gehrig Day, officially recognized by Major League Baseball (MLB), is dedicated to honoring his memory, typically taking place on June 2, the date of Gehrig’s death in 1941. All 32 MLB teams are participating in celebrations of the fourth annual event this year.

Behind each statistic is a person, a family, a community fighting for hope. With advancements in research and technology, we are closer than ever to understanding ALS and finding treatments, but we need your help to finish the story.

Community and international events

ALS One is launching its first annual ALS Advocacy Day on May 2 at the Massachusetts State House, in partnership with multiple ALS organizations, people with ALS, and community members.

The day will raise awareness about ALS, and address the need for increased research funding and significant challenges faced by individuals with the disease to help all achieve the best possible quality of life.

Hope Lives: Art for ALS is an annual art exhibition, fundraiser, and awareness-building event held May 7-31 at the San Francisco Women Artists Gallery, in California. The show includes artwork created by people with ALS, and funds will support the ALS Therapy Development Institute’s mission to discover and develop novel ALS treatments and, ultimately, a cure.

The Les Turner ALS Foundation is “racing to a cure” with these May events:

“We’re racing for a cure across [these] great events! Whether you’re new to running or ready to set a new personal record, there’s a place for you on our team,” the organization stated on its website.