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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.

 

Life Is About How We React - Rare Disease Day - February 28th

Join FARA for a social campaign to raise awareness for Rare Disease Day!

Rare diseases affect more than 350 million people worldwide. Rare Disease Day is a global awareness effort to draw attention to all rare disease.

This year, FARA is launching a social media campaign with the theme- Life is about how we react, taken from the documentary film, The Ataxian, which has been selected to kick off the Rare Disease Week activities in Washington DC. FARA invites you to join this social campaign to show the world how you react to rare disease.

Read more: Life Is About How We React - Rare Disease Day - February 28th

THE ATAXIAN Kicks Off Rare Disease Week on Capitol Hill

FOR IMMEDIATE RELEASE

 

"THE ATAXIAN" Kicks Off Rare Disease Week on Capitol Hill:

DOCUMENTARY FEATURES RARE DISEASE PATIENTS’

LEGENDARY BIKE RIDE ACROSS AMERICA

 

- Feature-length Film with Kyle Bryant and Sean Baumstark Screened at the Naval Heritage Center on Sunday, February 25, 2018 -

 

Washington, DC (January 29, 2018) .Rare Disease Legislative Advocates (RDLA) is partnering with Redwood Creek Entertainment and Executive Producer Thomas Hamilton to present a screening of “The Ataxian” (www.TheAtaxianMovie.com) a documentary film, featuring two people living with Friedreich's ataxia (FA), Kyle Bryant and Sean Baumstark, and their team’s legendary bike ride across America in just nine days. The screening will take place on Sunday, February 25, 2018, at 7pm at the Naval Heritage Center (701 Pennsylvania Avenue, NW) in Washington, DC.

 

How would you react to a life-debilitating and fatal illness? In “The Ataxian,” two men show the world that it is possible to take action and find hope under even the most life-threatening and daunting of circumstances. At age 17, Kyle Bryant was diagnosed with the relatively unknown progressive neuromuscular disease, FA, for which there is no medication, nor cure. As Kyle lost his ability to play his favorite sports and even walk, he began biking long distances in a specially outfitted “trike.” When he is finally relegated to a wheelchair, Kyle decides that enough is enough. He enlists the help of three friends, Sean—who also has FA—John and Mike, and they embark on the “world’s toughest bike race,” the Race Across America (RAAM). 

 

In this feature-length documentary filmmakers and childhood friends, Kevin Schlanser and Zack Bennett, capture what is a grueling non-stop journey for anyone—much less someone with an energy-depriving affliction—that starts in Oceanside, CA, ending in Annapolis, MD. What happens along the way inspires hope in the hearts of other families battling FA and nurtures a movement, known as rideATAXIA. Set to an incredible soundtrack featuring Bon Iver, Sigur Ros, Belle Brigade and others, the audience accompanies Kyle and his relay bike team through magnificent sweeping landscapes and the unbreakable spirit of a life-changing cross-country trip that shows: life is about how we react.

 

The screening will be preceded by a cocktail reception at 5:30pm and followed by a panel Q&A featuring Kyle Bryant, Sean Baumstark, Executive Producer, FA parent and Friedreich;s Ataxia Research Alliance (FARA) Board Member Tom Hamilton, and FARA Research Director Dr. Angel Martin. The Q&A will be audio-recorded as an episode of the Two Disabled Dudes Podcast.
To register for the event, visit:
http://action.everylifefoundation.org/p/salsa/event/common/public/?event_KEY=10426

 

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

 

Read more: THE ATAXIAN Kicks Off Rare Disease Week on Capitol Hill

You May Be Going to the Super Bowl!

Superbowl Auction
Through a generous donation from the National Football League Foundation , FARA has two tickets to the 2018 Super Bowl up for charity auction. Super Bowl LII will take place on Sunday, February 4 at the U.S. Bank Stadium, Minneapolis, Minnesota. The tickets are for seats in Section 335, Row 9, Seats 5-6. The minimum bid for the two tickets is $5,000. Bids must be made in $100 increments. The auction will open at 11:00am (EST) on Wednesday, January 17, 2018 and close at 8:00pm (EST) on Monday, January 22, 2018.

Read more HERE

FARA Job Posting: Communications Coordinator

Click to view PDF
FARA is seeking a full time Communications Coordinator.

Please click HERE for more information.

Tell Congress to Keep the Orphan Drug Tax Credit!

Dear FA Ambassadors / American FA families,

As we all know, the US Congress is currently working on tax reform. One of the current laws being reviewed is the Orphan Drug Tax Credit which was enacted as part of the Orphan Drug Act in 1983. This law is very beneficial to the FA community. It has successfully encouraged drug development in rare disease and we do not want to lose this incentive for research and therapy development.

NORD details the concern beautifully in their policy alert below and provides the links to enable you to contact your two Senators and House of Representative member. Phone calls are given more attention in government offices but if time or comfort does not permit a call, please join the effort by sending an email to your three representatives. On the NORD Alert, when you click on “emailing your senators” and enter your address, you are provided the text for your email, You can personalize the email message if you wish and type in your name at the bottom. When you click on “submit,” the email is sent to your two senators and one house representative. So, this important action should take only a few minutes.

All senators and house members will be important in the final vote and some will have more influence over what happens based on the committees on which they sit. If one of your senators or your house representative is among those listed below, your voice could be the one that sways their vote to support the Orphan Drug Tax Credit. Please contact them as soon as possible and urge them to vote to preserve this important incentive to treat and cure FA and other rare diseases.

Warm regards,
Ron Bartek & Brigid Brennan

US Senate
Committee on Finance


Chairman Orrin Hatch (UT)
Ranking Member Ron Wyden (OR)

Chuck Grassley (IA)
Mike Crapo (ID)
Pat Roberts (KS)
Michael Enzi (WY)
John Cornyn (TX)
John Thune (SD)
Richard Burr (NC)
Johnny Isakson (GA)
Rob Portman (OH)
Patrick Toomey (PA)
Dean Heller (NV)
Tim Scott (SC)
Bill Cassidy (LA)
Debbie Stabenow (MI)
Maria Cantrell (WA)
Bill Nelson (FL)
Roberty Menendez (NJ)
Thomas Carper (DE)
Benjamin Cardin (MD)
Sherrod Brown (OH)
Michael Bennet (CO)
Robert Casey (PA)
Mark Warner (VA)
Claire McCaskill (MO)















House of Representatives
Ways and Means Committee


Chairman Kevin Brady (TX)
Ranking Member Richard Neal (MA)

Sander Levin (MI)
John Lewis (GA)
Sam Johnson (TX)
Lloyd Dogged (TX)
Devin Nunes (CA)
Mike Thompson (CA)
Pat Tiberi (OH)
John Larson (CT)
Dave Reichert (WA)
Earl Blumenauer (OR)
Peter Roskam (IL)
Ron Kind (WI)
Vern Buchanan (FL)
Bill Pascrell (NJ)
Adrian Smith (NE)
Joseph Crowley (NY)
Lynn Jenkins (KS)
Danny Davis (IL)
Erik Paulsen (MN)
Linda Sanchez (CA)
Kenny Marchant (TX)
Brian Higgins (NY)
Diane Black (TN)
Terri Sewell (AL)
Tom Reed (NY)
Suzan DelBene (WA)
Mike Kelly (PA)
Judy Chu (CA)
Jim Renacci (OH)
Pat Meehan (PA)
Kristi Noem (SD)
George Holding (NC)
Jason Smith (MO)
Tom Rice (SC)
David Schweikert (AZ)
Jackie Walorski (IN)
Carlos Curbelo (FL)
Mike Bishop (MI)


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