Hello friends,
Welcome to May and the start of FA Awareness month! FA Awareness Day is just around the corner on Saturday, May 15th. We are excited to join our partner, fara- Australia's, Lend Us Some Muscle™ (LUSM) campaign. If you haven't had the chance to join yet, it's easy.
- Challenge yourself or a group of friends to do something active during May
- Or simply flex your muscles and share your pics on socials with #lendussomemuscle #lusm2021
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Go to give.curefa.org/lusm to make a donation
Thanks to a generous matching gift challenge by The Burrows Hill Foundation, the first $25,000 donated to this campaign will be matched dollar-for-dollar!
Donations made on behalf of LUSM will support the Award for Innovative Mindset (AIM). AIM was designed to promote the exploration of high-risk, high-gain, and potentially groundbreaking concepts in FA research. The intent of the award was to inspire creativity, thoughtful reflection, innovation and to advance FA research.
We are also proud to present: The FA Research Flash Talks series - featuring Young Investigators from FARA funded laboratories around the world. This four-part series will cover key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session will include Flash Talks from four to five Young Investigators (ie, postdocs and graduate students). Each Flash Talk will be limited to a maximum of five minutes and a single PowerPoint slide and will be suitable for a lay audience. We will also allot time for a brief Q&A following the talks.
The first session will be tonight, Thursday, May 6 at 7pm (EDT). Click the button below to register for one, two, three, or all four of the sessions. You will have the option to select which sessions you wish to attend.
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Sincerely,
Jen
Jen Farmer,
Chief Executive Officer
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FA Families & the Military |
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FARA is making a special outreach to community members who either served in the US military or have a family member (spouse, parent, child, sibling, grandparent) who served. FARA is exploring a research program run by the Department of Defense and the possibility of adding FA. It will be helpful to show a connection between military families and FA. Thank you for helping FARA with this project by sharing your family's experiences. |
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The next Minutes of Science episode is here! Episode 4: FXN Gene Silencing
Continue to tune into the series with new episodes debuting every month! You can also watch the entire series on the FARA YouTube page here. |
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Throughout the month of June, we'll be sharing your favorite rideATAXIA photos and stories (like this photo to the right from 2007), as we race against our 2020 selves in mileage and fundraising dollars. Our goals are to ride 30,000 miles in 30 days and raise $75,000 to support FA research. We'll aggregate our individual miles as one rideATAXIA NorCal team on Strava and even try to get in some smaller local team rides. Please plan to join us in this rideATAXIA trip down memory lane.
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FARA launched a newsletter dedicated to Advocacy News to keep you up to date on the latest initiatives as well as education and outreach opportunities. Click here to read the latest issue. |
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Instrumental Data Exchange for Ataxia (IDEA study)
39 FA participants are needed to fill this study by the end of 2021. The outcomes of this study are critical for allowing remote data collection during future clinical trials.
- Participants must be 12-30 years of age and be able to walk 10-feet independently, without an assistive device.
- Participants can be involved in an investigational drug trial and still be eligible for the IDEA study.
The IDEA research study is testing body-worn sensors to measure movement. The goal of the study is to evaluate progression and severity of ataxia. The study involves visits every 6 months over 2 years at a clinic site. Involvement in the study provides compensation for travel and an Apple watch.
Participants are needed at all clinic sites in Baltimore (Johns Hopkins), Boston (MGH), Chicago (University of Chicago), Los Angeles (UCLA) or Portland (Oregon Health & Science University).
For additional eligibility criteria, please contact study coordinator Hannah Casey
(hannahcasey@uchicago.edu) or (773) 702-4610. Please specify your city of interest for enrollment - Baltimore, Boston, Chicago, Los Angeles or Portland (OR).
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Enrollment now open at University of Iowa, University of South Florida, UCLA, Children’s Hospital of Philadelphia (CHOP), Murdoch Children’s Research Institute (Australia) and CHUM (Canada).
**There are several participant openings with Dr. Mathews at the University of Iowa**
Additional sites will open in Europe and Brazil in May-July 2021.
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Sites include: University of Florida, University of Minnesota, Children's Hospital of Philadelphia, and Monash University (Australia)
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Currently, 14 participants needed for this study.
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Anyone considering participating in a clinical trial should discuss the matter with his or her physician. FARA does not endorse or recommend any particular study. |
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The goals of the FA Global Patient Registry (FAGPR) are to collect information on all FA patients in one registry, to develop the registry into a powerful resource for research, and to engage the FA community in studies aimed at advancing our knowledge of FA and the treatments being developed.
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The Pathway
You can help fund research progress all year by joining our monthly giving program, The Pathway. When you join The Pathway with a monthly donation of $10 or more, you are joining a community invested in setting a path to treatments and a cure for FA through research. Click the image to give today.
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