Supporters Set to ‘Flex Their Muscles’ for Awareness Month in May

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by Mary Chapman |

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Events are underway globally to mark Friedreich’s Ataxia Awareness Month, observed each May, to heighten awareness about the neuromuscular disease and those it affects. Awareness Day is May 15.

Patients, caregivers, and advocates worldwide will flex their muscles, sport temporary tattoos, and participate in research presentations — all in the name of Friedreich’s ataxia (FA), the progressive inherited disorder that primarily affects the nerves and muscles.

The events seek to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.

Despite challenges posed by the COVID-19 pandemic, the nonprofit Friedreich’s Ataxia Research Alliance (FARA) has several ways supporters can get involved in efforts to call attention to FA and to raise funds for research.

“When we are informed and connected as a community, we operate from a place of strength,” Felicia DeRosa, FARA vice president of fundraising and communications, told Friedreich’s Ataxia News in an e-mail.

This year, FARA is joining fara Australia’s annual Lend Us Some Muscle (LUSM) challenge, which was established in 2017 to help find a cure for FA and has since become an international event that also includes FARA New Zealand.

Supporters can participate as individuals or teammates in the campaign dubbed “the greatest muscle show on earth” to help raise $50,000 for FARA-sponsored research. The Burrows Hill Foundation has pledged to match contributions of up to $25,000.

In the challenge, the global FA community and their friends, family, and colleagues are encouraged to do something that gets their heart pumping and their muscles moving. They can host arm-wrestling or chin-up competitions, for example, or simply take a photo of themselves flexing their muscles and share it on social media using the hashtags #lendussomemuscle and #LUSM2021. U.S. residents can have a free pack of temporary tattoos mailed to them to wear for the campaign.

“Participants can strike their best poses, decorated with temporary tattoos, as a way to share the strength of a global community of 15,000 people living with FA,” DeRosa said.

The LUSM campaign is also a way to raise funds for a research grant called the Award for Innovative Mindset, designed to promote the exploration of high-risk and potentially groundbreaking concepts in FA research, she said. The overarching aim of the award is to inspire creativity and innovation to foster new directions, address neglected areas, and to advance FA investigations. Applications for this year are due by June 1.

In addition to that campaign, FARA is hosting a weekly series of “Flash Talks” in May that feature presentations from young investigators who are engaged in FARA-funded projects around the world. Each session will include four or five flash talks — five-minute research presentations designed for a general audience — plus time for questions and answers. The webinar series will cover key aspects of FARA-supported research, from gene silencing and disease mechanisms to therapeutic avenues and clinical insights.

“This will be a great opportunity to hear from the researchers themselves about a number of efforts,” DeRosa said.

Supporters are also asked to use the month to help raise awareness of Friedreich’s ataxia by spreading the word about FARA through their online social networks. They can follow FARA on Facebook, Twitter, LinkedIn, and YouTube.

FARA also has a letter writing campaign with a template available for those who wish to help raise awareness by explaining to family, friends, business associates, and others how they can help in the fight against FA. Another way for supporters to heighten awareness about FA and FARA-funded research is to speak in their community — at their school, church, library, place of employment, for example. To talk with someone at FARA about how best to prepare for a speaking engagement, send an e-mail to [email protected].

Available on FARA’s website are fundraising tools such as sample letters; logos; informational materials including a fact sheet, a brochure, and videos; and banners and promotional items such as bracelets, pins, and bumper stickers. There’s also a fundraising guide and a booklet of fundraising event ideas. For more assistance with hosting a fundraiser, e-mail [email protected].

On May 22, the fourth annual Cure FA Soirée takes place in Edmond, Oklahoma, to benefit FARA. The event will feature live music and videos, dinner and dessert, a silent auction and more. Individual tickets are $100. Those experiencing financial hardship can e-mail [email protected] to ask about donated tickets.

“We look forward to celebrating and highlighting more of our collaborative efforts in May — FA Awareness Month — when we join fara Australia in their annual ‘Lend Us Some Muscle’ campaign, and we bring back the FARA Flash Talk series featuring our young investigators,” FARA states. “Thank you for all the ways you collaborate to bring us closer to treatments and a cure for FA.”