Fundraising, advocacy are focus of this year’s ALS Awareness Month

'ALS Community Spotlight' to tell patients' stories in their own words

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by Susie Strachan |

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Recognized each May, ALS Awareness Month provides an opportunity for people living with amyotrophic lateral sclerosis and their families — as well as healthcare professionals, researchers, experts, and advocates — to increase awareness and education in the community at large, and to raise funds, all in the hope of ending ALS.

ALS Awareness Month has been observed in May in the U.S. since 1992. This year’s efforts will continue to unite and support those living with the neurodegenerative disease, which is estimated to impact around 30,000 people in the U.S., with about 5,000 new cases being diagnosed each year.

Globally, ALS affects approximately four per 100,000 individuals, and the numbers are on the rise, partly due to an aging population worldwide.

But ALS awareness isn’t only about the statistics, so ALS News Today is using this year’s awareness month to highlight the stories of people living with the progressive neurological disorder. Its new campaign, “ALS Community Spotlight,” will focus on these individuals and their hopes, struggles and treatments, and overall quality of life.

The project will give people the opportunity to raise awareness about what life is like with ALS, to highlight the charitable organizations that support them, and to raise funds for continuing research into treatments.

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MDA to host wide range of ALS Awareness Month events

The Muscular Dystrophy Association (MDA), a nonprofit that has advocated for more than 70 years for people living with neuromuscular diseases, has planned multiple educational and fundraising events throughout May.

A five-week virtual education program, starting May 4, will feature keynote speaker Doreen Ho, MD, a neurologist at the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital, in Boston. Ho will speak about recent research and promising clinical trials for ALS.

The virtual learning series will offer sessions on research updates and ongoing clinical trials, physical therapy and adaptive equipment, respiratory care, and financial planning. There also will be a drug development roundtable and an ALS caregiver panel run by a mental health nurse.

“MDA’s strategic focus on ALS research has led, directly or indirectly, to the development of [five] approved treatments for ALS … but we’re not stopping there,” Donald S. Wood, PhD, MDA’s president and CEO, said in a press release.

The latest disease therapy, Qalsody (tofersen), was granted approval in the U.S. earlier this month for ALS associated with mutations in the SOD1 gene.

“We are connecting people with ALS to clinical trials through our MDA Care Center Network, where cutting-edge research is combined with multidisciplinary care. At the same time, our advocacy team has helped get the historic ACT for ALS signed into law,” Wood said.

Several other MDA events are slated for May:

  • A golf fundraising event, called the Arizona Golf Classic, will take place May 4 at the McCormick Ranch Golf Club in Scottsdale. It will feature “Beat the Pro,” a golf ball launch, and event swag.
  • A May 19 fundraising event will be held in partnership with the Dutch Bros Foundation. Funds will be donated to the MDA for each drink sold during the Drink One for Dane event. The program will be announced May 15.
  • Led by the MDA Advocacy Institute, a discussion on legislation to improve care and funding for the ALS community and key ALS programs will be held May 24.
  • A fundraising dinner called Wings Over Wall Street, to be held at the Hotel Edison’s The Rooftop at Edison’s Ballroom, in New York City, will happen on June 1. The event has raised nearly $13 million to fund ALS research over the past 23 years.
  • An in-person educational MDA Engage symposium will be held in Princeton, New Jersey, on June 3. It will be chaired by Matthew Harms, MD, a medical consultant at the MDA and a professor of neurology at Columbia University.

The MDA also will honor Lou Gehrig Day, June 2, by engaging with the community at Major League Baseball games across the country. Events are being planned with the Boston Red Sox, Washington Nationals, and Arizona Diamondbacks.

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Events to be held nationwide in May

Another advocacy organization, I Am ALS, will be placing 6,000 flags on the National Mall in Washington, D.C., from May 10 to 13, to mark ALS Awareness Month. The flags will each bear the name of a person living with ALS or lost to the disease, or an individual who is an ALS gene carrier.

During the event, I Am ALS also plans to share stories told by community members, meet legislators, and educate the public about ALS.

Meanwhile, chapters of the ALS Association also are hosting a number of events in May. Among them are a horse-racing event and a culinary gala:

  • The 2023 ALS Hope Derby Gala on May 6, in Milwaukee, Wisconsin, aims to unite the community and raise money for ALS. It will tie in to the 149th running of the Kentucky Derby.
  • The ALS Fiesta, occurring May 10 in Valley Center, California, will honor the work of caregivers. It’s being dubbed as “FIESTA: an evening to benefit the ALS Association,” and will feature ALS advocate and caregiver Sarah Trott as the guest speaker.
  • The 14th annual Bite Nite culinary gala, hosted by the ALS Association Arizona Chapter on May 20 in Tucson, will raise funds and awareness for ALS while showcasing unique foods and live music.
  • On May 20, the association’s Evergreen Chapter, which serves Washington, Idaho, Montana, and Alaska, will host a Together We Are… Hope, Courage, Love gala. To be held in Woodinville, Washington, the event will feature a dinner and aims to raise awareness about ALS. It will be live streamed for those who cannot attend in person.

The second annual Hope Lives: Art for ALS will run at the San Francisco Women Artists Gallery from May 2 to 26. The exhibit will showcase 11 artists featuring ceramic sculpture, collage, mixed media, and paintings. A portion of the proceeds from the art sales will be donated to the ALS Association’s Golden West Chapter. The event, now in its second year, was launched by the sister of an ALS patient.

The Les Turner ALS Foundation, based in the Chicago area, uses ALS Awareness Month to rally around those living with the disease, and to raise funds and awareness. It encourages participation in the Lew Blond Memorial 5K Walk/Run, to be held this year on May 20, in Northbrook, Illinois, and the ALS Walk For Life.

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New films about ALS highlight patient journeys

The Fight ALS Film Festival also is upcoming, with weekly online showings in May followed by panel discussions. The events are hosted by the ALS Therapy Development Institute (ALS TDI), a drug discovery lab, the advocacy group Her ALS Story, and the biotechnology company BrainStorm Cell Therapeutics.

Week one features an extended trailer for the documentary Go On, Be Brave, about Andrea Lytle Peet’s attempt to become the first person with ALS to complete a marathon in all 50 U.S. states. Other films include Augie, It’s Not Yet Dark, From the Passenger Seat, and Mind Over Matter.

Independent Television Service’s film Matter of Mind: My ALS, showing on PBS on May 1, also will feature three people living with ALS as they make complicated choices over the course of their disease’s progression. Part of the Independent Lens series, the film follows the African-American architect Phil Freelon, former mechanic Charlie Wren, and communications director Michele Stellato.

Finally, Target ALS will hold its annual meeting May 3-5 both in Boston and virtually. Attended by scientists, academics, venture capitalists, and others, it offers networking about the state of ALS research.

Together, advocates say, this month’s awareness initiatives can help to advance knowledge about ALS — and move closer to a cure.

“We will continue to work alongside families, guided by a vision of a world without ALS,” the MDA’s Wood said.