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FARAFARA Cure FA

 

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.

 

Arizona woman to swim across state lakes for rare disease research


PHOENIX (KPHO/KTVK) - An Arizona woman is swimming across four state lakes to raise money for research to find a cure for a rare disease that two of her brothers have. Kristin Jones is participating in the SCAR Swim. Participants swim from dam to dam through Saguaro Lake, Canyon Lake, Apache Lake and Roosevelt Lake. Jones and dozens of others from around the world started on Wednesday, and the event runs through Saturday.

She is raising awareness and money for the Friedreich's Ataxia Research Alliance. It's a nonprofit that is researching a way to treat and cure Friedreich’s ataxia (FA), which is a debilitating, life-shortening, degenerative neuro-muscular disorder.

View the video and article HERE

Make it a FARA Weekend in Philly!


On May 7th, ride with rideATAXIA Director Kyle Bryant and others cycling with Team FARA in The Penn Medicine Orphan Disease Center's Million Dollar Bike Ride.   www.milliondollarbikeride.org

The next morning, head north of the city to beautiful Bucks County to support the Logan FAmily at the 4th Annual 5K Race for Christina! The event, held in honor of FARA Ambassador Christina Logan, has raised over $30,000 for FARA over the past four years!   fara.convio.net/raceforchristina2016
 

Tod Leiweke Honored as Lightning Community Hero


Thank you to Tod Leiweke, current NFL COO and former Tampa Bay Lightning CEO, for sharing his Lightning Community Hero award with FARA. As chair of the FARA Energy Ball for 5 years with his wife Tara, Tod and the Lightning organization have been incredible supporters of FA research advancement and dear friends. Click here to learn more about Tod's Lightning Community Hero award.

Read the entire article HERE

Anna's Army Movie Star Masquerade Ball was held Saturday night

The stars came out for a masquerade ball in Vienna to benefit a special woman, and a special cause. Hundreds attended Anna's Army Movie Star Masquerade, on Saturday, and dressed up as Hollywood characters, and actors.

The Guest of Honor, Anna Gordon, suffers from Friedreich's Ataxia, a disease that targets the immune, and nervous system. The money raised at the event goes towards the disease's Research Alliance.

Melissa Gordon, the mother of Anna Gordon, said, "The outpouring of this community is just overwhelming. That's what brings me to my knees."

Read the article and see video HERE
 

NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17

Continuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® announces the 2016 Rare Impact Award recipients to be honored on May 17.

In its inaugural year, the Rare Impact Awards continues NORD’s 30-year tradition of bringing the entire rare disease community together to celebrate those who are making extraordinary contributions to help others.

Read the entire article HERE
 
 
 

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News & Press Archives