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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.


Advocacy Newsletter - June 2022


Washington is currently abuzz with proposals that directly impact research. The Advanced Research Project Agency for Health (ARPA-H) just launched, the Prescription Drug User Fee Act (PDUFA) needs to be reauthorized by September 30, Cures 2.0 is being drafted and on top of all this, FY 23 Appropriations are being negotiated. It is an exciting time to be an advocate for FA research!

This month's Advocacy Newsletter covers the following topics:

  • Capitol Hill Updates
  • Upcoming Advocacy Events
  • Announcements

More...

Read the full June Advocacy Newsletter
 
 

Strong Partnership Funds the 2022 Ataxian Athlete Initiative (AAI) for People with Ataxia

DOWNINGTON, PA, June 1, 2021 -- The Friedreich's Ataxia Research Alliance (FARA), in partnership with the Burrows Hill Foundation, and Catrike, is pleased to offer adaptive cycling equipment through Ataxian Athlete Initiative (AAI). The AAI is a unique program providing adaptive cycling equipment to people with ataxia who have demonstrated a strong desire to stay active and exercise despite their progressive disabilities.

Ataxia is a debilitating neuro-degenerative disease affecting children and adults. Friedreich's ataxia (FA) is the most common of inherited ataxias, affecting balance and coordination and has symptoms such as vision and hearing loss and life shortening heart complications.

AAI grants are administered through a competitive application process. Applicants research the most appropriate adaptive cycling equipment to suit their abilities and describe how such equipment would help them to reach their fitness goals and improve their quality of life.

"We are honored that people living with Ataxia have trusted Catrike to provide trikes for years through the AAI, and we take pride in being able to help people of all abilities experience the joy and freedom of cycling,” says Mark Egeland, General Manager of Catrike. catrike.com

The AAI has provided equipment for 86 individuals since 2009. As the lead sponsor, The Burrows Hill Foundation generously provided the funding for the 2022 AAI. In 2022, the AAI funded 5 grants for adaptive cycling equipment, including four Catrikes. The recipients are: Judith Trivett of Ocean Springs, Mississippi, Karen Hunt of Clyde, North Carolina, Michael Kelly of Bainbridge Island, Washington, Nora Moser of Gig Harbor, Washington, and Shandra Trantham of Gainesville, Florida.

Rolf Hill, from The Burrows Hill Foundation burrows-hill.org, added, “The Burrows Hill Foundation is honored to work with the AAI again this year. We are so proud to be able to help these five worthy recipients receive recumbent trikes.” A 2022 AAI recipient, Shandra Trantham, described her ride when she borrowed a Catrike for the rideATAXIA Gainesville event, “I only signed up for 2 miles out and 2 back, but at the halfway point I felt too alive and free to cut my adventure short. In everything I try to do to stay active, my legs are what holds me back. On the trike, my legs were what powered me to move, and the joy I felt from that could not be capped.”

Visit curefa.org/aai for more information and to view more photos of past recipients. The next application cycle begins in Spring 2023.
 
 

The Pathway Continues to Grow!

Pathway Logo
At FARA, we believe that the road to treatments and cures for Friedreich’s ataxia is paved by a steadfast commitment to funding research. The Pathway, our monthly giving community, is a budget-friendly way to invest in FARA's mission.

We are grateful to the 125 families who have made an ongoing commitment to FA research through The Pathway. Together, they have contributed over $110,000 since the program was launched in August 2020! This amount is equivalent to the support needed to fund an investigator at an FA research lab bench for two years.

This June, we invite you to join the Pathway community in sustainably supporting FARA’s mission through a monthly gift. Our goal is to add 25 new supporters to the program- bringing the number of dedicated supporters to 150. 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 cures for FA through research.

Join The Pathway Today


Hopkins Family
“Our contribution helps in a very small way to provide a secure and steady funding source for the non-stop work being performed by FARA – in practical support of our FA-ers and families, and in organizing, coordinating, and leading the FA community’s collective effort to develop treatments and improve lives.”

-The Hopkins Family, The Pathway supporters since 2021

 
 
 

rideATAXIA Philly & FA Symposium - Registration now Open!

rideATAXIA Philadelphia & FA Symposium
September 24th & 25th, 2022
King of Prussia, Pennsylvania
REGISTRATION NOW OPEN!

The Friedreich's Ataxia Research Alliance (FARA) and the Friedreich’s Ataxia Center of Excellence at Children’s Hospital of Philadelphia (CHOP) are pleased to present this hybrid in-person and virtual symposium providing patients and families with up-to-date information about current research and therapeutic approaches in Friedreich’s ataxia.

This symposium will be held on September 24th & 25th 2022 at the Sheraton Valley Forge in King of Prussia, PA. The symposium will begin with a welcome reception Saturday, September 24th from 5:00pm - 6:30pm (ET). The general session and presentations will follow on Sunday, September 25th from 8:00am - 4:30pm (ET).

Click to register and select in-person or virtual participation.
Register for the Symposium


rideATAXIA logo

Plan to make it a FARA weekend!   rideATAXIA Philly will be on Saturday, September 24th in Harleysville, PA. The ride will start from LCBC Church: BranchCreek Campus and include 46, 21, 6 and 3 mile cycling routes along with a 1 mile ride/ walk option. Register today!
Register for the RIDE

Hotel Information

Sheraton Valley Forge Hotel in King of Prussia, PA (610-268-7500) has blocked rooms under the name FA Symposium Sept22 for a rate of $129 a night. Hotel reservations must be booked by Tuesday, August 23rd 2022.
More...

Read More Here
 
 

2022 FARA Flash Talk Series - Part 4


In honor of FA Awareness month in May, FARA is proud to present: The third annual FA Research Flash Talks series - featuring Young Investigators from FARA funded laboratories around the world. This four-part series covers key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session includes Flash Talks from four to five Young Investigators (ie, postdocs and graduate students) moderated by an FA Community member. Each Flash Talk is limited to a maximum of five minutes and a single PowerPoint slide and is suitable for a lay audience.

Session 4 covered the following topics:

  • Can we slow down the GAA repeat expansion over time?
  • Creating amoebas with FA to test potential treatments
  • Turning skin cells into brain cells: a new disease model of FA
  • Uncovering yet another function of frataxin in the cell
  • NAD+, A new potential treatment for the heart in FA
View the full Flash Talks playlist
 
 
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