Flash Talks on Friedreich’s Ataxia aim to educate in Awareness Month
FARA's 4 weekly webinars in May to focus on research findings
May is Friedreich’s Ataxia (FA) Awareness Month, and advocates and patient organizations have slated several initiatives — including weekly webinars — to focus attention on the rare disease and ongoing research aimed at its cure.
Leading these efforts is the Friedrich’s Ataxia Research Alliance (FARA), which will mark this year’s awareness month with four research webinars it’s dubbed FARA Flash Talks. The nonprofit’s aim is to provide a deeper understanding of FA for the entire community — and to highlight potential therapeutic targets, outcome measures, and biomarkers for clinical trials.
“This four-part series will cover critical aspects of FARA-funded FA research, from gene silencing and disease mechanisms to therapeutic approaches and clinical insights,” the organization states on its event webpage.
Activities abound for FA Awareness Month
Named after the German physician who first described it, FA primarily affects the nerves and muscles of the body, causing loss of coordination and muscle strength, among other symptoms.
There is no cure, but the FA community this year welcomed the first therapy approved in the U.S. for this patient population. Skyclarys, approved in February for people with FA ages 16 and older, is expected to slow or prevent the disease’s progression.
With the Flash Talks, FARA hopes to highlight other ongoing research.
Given by postdoctoral researchers and graduate students, and moderated by FA community members, the talks are scheduled for May 4, 11, 18, and 25. Each week requires a separate registration. The presentations will be geared toward a lay audience, with each talk limited to five minutes and one slide. A brief Q&A will follow.
One talk, to be held on May 11, is titled “A broccoli compound and its potential use for FA,” while another offering that day is “How is diabetes in children with FA different from adults?”
Among the talks’ presenters may be recipients of the FARA Fellow Program, which recognizes young investigators dedicated to FA research with a $10,000 award and financial support to attend scientific conferences.
Many of the events FARA has planned for this month will occur in the lead-up to FA Awareness Day, to be celebrated on May 20. It’s marked each year on the third Saturday of the month.
FA advocates around the globe make up Team FARA, who take part in endurance events on behalf of the alliance to raise awareness and funds.
On May 7, FARA members will hold a Five Boro Bike Tour in New York. The event’s webpage invites cyclists to “join Team FARA on a ride through every borough of New York City on streets free of cars to raise awareness & funds for FA research!”
In the neighboring Garden State, the New Jersey Seaside Stride on May 13 features what organizers dub as “a leisurely walk along the Seaside Park and Seaside Heights boardwalk.”
“We invite you to join us for a day of family and fun in honor of New Jersey’s children diagnosed with Friedreich’s Ataxia,” the event’s webpages states.
The event, which also boasts an auction, kicks off 10 a.m. with coffee and bagels, and is followed by “music and fun.”
Elsewhere, the Lend Us Some Muscle Global Challenge 2023 encourages supporters anytime during May to get active by doing whatever it is they love. Activities may include running, hitting the gym, joining yoga classes, or taking the dog for a walk.
Those interested can register to fundraise, and then be active in May, sharing photos on social media. Participants are encouraged to use the hashtags #LENDUSSOMEMUSCLE, #CUREFA, and #FARAAUSTRALIA.
“Help us raise funds and give hope to those living with FA!” the webpage states.
Partners in the challenge are FARA, Fara Australia, FARA New Zealand, and Ataxia.
Awareness efforts will kick up again in September, with the marking of International Ataxia Awareness Day, slated for Sept. 25th.