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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.


Saratoga County families highlighted in Rare Disease Movie Night

Dylan McDonnell discusses Friedreich's Ataxia , a debilitating, degenerative, neuromuscular disorder that has left him in a wheelchair, on Friday, Feb. 12, 2016,during an interview at his home in Ganesvoort, N.Y. less Dylan McDonnell discusses Friedreich's Ataxia , a debilitating, degenerative, neuromuscular disorder that has left him in a wheelchair, on Friday, Feb. 12, 2016,during an interview at his home...

Read the entire article HERE

2015 FARA grassroots events raise over $1 Million for FA research!

At the beginning of 2015, FARA issued a $1 Million fundraising challenge to our FAmily of grassroots fundraisers, a campaign called Mission 1 Million. We are excited to report that thanks to your generous volunteer efforts organizing over 60 grassroots events to benefit FARA, the Grassroots Program has exceeded $1 Million in fundraising again this year!

The support we have received from dedicated team members like you has led to new drug discoveries filling a rich research pipeline with diverse approaches to treatment and new partners. This past year alone, three new clinical trials were launched and FARA also started a collaborative biomarker initiative to find ways to better measure the potential effectiveness of a therapy in a shorter period of time.

The grassroots fundraising program has always played a significant part in FARA's ability to fund research. When you reach your individual event goals, TOGETHER we draw closer to our program goal of $1 Million and as a result keep up an urgent pace to research. Let's use this excitement and momentum to continue research progress into 2016!

Former teacher continues to beat the odds

“I would like to see a treatment or cure in my lifetime. Not only is that my Christmas wish; it’s my wish everyday.”
Christin Haun, diagnosed in 1985 with Friedreich’s Ataxia

It’s difficult to know what one might notice first about Christin Haun — her beautiful face, captivating smile or contagious sense of humor. She laughs easily and often.

It is a surprise then to hear her story and know at the emotional age of 15, this typical teenager was told she would be in a wheelchair by 20 and dead by 30.

“There were some confusing changes,” Haun said, “And, I had no idea why.” Her mother took her to a neurologist who offered devastating news about what lay ahead.

Read the entire article HERE

Gavin Lambert, 10, doesn't allow disorder to hold him back


When Gavin Lambert was 5 years old, his parents, Kevin and Dawn Lambert, learned that he had Friedreich's ataxia, a degenerative and debilitating neuro-muscular disorder that impairs basic abilities such as walking, hearing, vision and movement.

Read the entire article HERE

Ron Bartek receives Lifetime Achievement Award

Ron Bartek receives Abbey Award
Congratulations to FARA's Founder and President Ron Bartek on receipt of "The Abbey"- an award for Lifetime Achievement for the Rare Disease Community. Ron was honored in the Patient Advocacy category and received the award at the RareVoice Awards Gala hosted by the Rare Disease Legislative Advocates. He is pictured here with Dr. Stephen Groft who was also honored with the same award in the Government Agency category for his dedication to stimulating research and advancing development of therapies during his tenure at the Food and Drug Administration (FDA) and National Institutes of Health (NIH). Congressman Fred Upton, sponsor/author of the 21st Century Cures Act, also received the Lifetime Achievement Award in the Member of Congress category.

Read the entire article HERE

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