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.
Fitchburg lawyer battling rare disease: ‘I want to walk’
It is a rare, inherited, progressive disease affecting one in 50,000 that results in loss of ambulation six to eight years after diagnosis and risk of premature death, with an average lifespan for those who have it of 35 years old.
Local attorney and politician Nicholas J. Carbone was diagnosed with Friedreich’s ataxia at 12 — when he was still able to walk. He is now 30.
Mr. Carbone is one of 10 people living with Friedreich’s ataxia chosen from across the country, and the only one from Massachusetts, to testify at a recent meeting of the U.S. Food and Drug Administration in Washington, D.C., attended by more than 25 FDA officials, more than 25 medical researchers and those from pharma, and 140 patients and family members.
Student battling rare disorder — with a smile — wins national writing contest
A Grosse Pointe fourth-grader's experience with a rare disease inspired her to write a letter that won first place in a national writing contest.
And Claire Juip, 9, is herself an inspiration — to her family, to her friends and to the community around her school, St. Paul Catholic School in Grosse Pointe Farms.
She and her brother, 11-year-old Jake, have Friedreich's ataxia. The genetic condition causes progressive damage to the parts of the nervous system involved in muscle control.
Despite the prospect of likely having to use a wheelchair someday, both children are filled with optimism, working to educate people about the condition and participating in sometimes painful medical studies in the hope of helping others.
Four National Organizations, Hundreds of Families Impacted, Join Together to Speak with FDA about Drug Development in Friedreich’s Ataxia
HYATTSVILLE, Md. June 1, 2017 — The Friedreich’s Ataxia Research Alliance (FARA), National Ataxia Foundation (NAF), Muscular Dystrophy Association (MDA) and Cure FA Foundation will host the first ever Friedreich’s Ataxia (FA) Patient-Focused Drug Development (PFDD) meeting on Friday, June 2, to give patients, families and caregivers the opportunity to speak directly to the U.S. Food and Drug Administration (FDA) about the impact FA has on their daily lives, and their highly unmet need for effective treatments.
FARA to Ring The Nasdaq Stock Market Closing Bell - Friday, May 19th
The Friedreich’s Ataxia Research Alliance (FARA), a non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia will visit the Nasdaq MarketSite in Times Square for Friedreich’s Ataxia Awareness Day.
In honor of the occasion, Ron Bartek, President and Co-Founder and Paul Avery, Chairman of the Board, will ring the Closing Bell.
JOIN AN UPCOMING LIVE WEBINAR TO LEARN ABOUT THE PATIENT FOCUSED DRUG DEVELOPMENT MEETING
JOIN AN UPCOMING LIVE WEBINAR on April 4th or April 11th TO LEARN ABOUT HOW THE FA COMMUNITY CAN PARTICIPATE IN THE PATIENT FOCUSED DRUG DEVELOPMENT MEETING WITH THE FOOD AND DRUG ADMINISTRATION
The Friedreich’s Ataxia Research Alliance (FARA), in partnership with the Muscular Dystrophy Association and the National Ataxia Foundation, will be hosting two live webinars in April to discuss how FA patients and caregivers can participate in the very important, upcoming Patient Focused Drug Development meeting with the U.S. Food and Drug Administration (FDA) in June.
Please join us for one of the two live webinars (click "Read More" below) to view key information, including background information about the FDA & drug development, an overview of FDA Patient-Focused Drug Development, discussion questions & format, tips for participating in the meeting, and meeting logistics.
Both webinars will cover the same material. To dial in, click on the appropriate link above and follow the instructions (hit the “More information” button for the meeting # & audio #). Plan to dial in five minutes early if you have never used WebEx (meeting software), as you may need to download software before joining. Participation in each webinar is limited to the first 100 people who join. The webinars will be recorded and can be viewed later for those who cannot participate live.
Our goal is to have as many patients and caregivers as possible participate in the Patient Focused Drug Development meeting (either in person or via live webcast). This meeting is your opportunity to tell FDA and drug developers about the challenges and burdens you have experienced with FA, and to share your thoughts about what is most important to you in evaluating potential new treatments for the disease. This meeting marks the first-time patients and their families affected by FA, and other caregivers, will be able to speak directly to the FDA and share their experiences in their own words.
Should I participate in a webinar if I cannot attend the FDA meeting in person?
YES! Please join us for one of the upcoming webinars to learn about the FDA meeting because even if you cannot attend in-person, we would like you to participate online via a live webcast. You will be able to actively contribute to the meeting and share your input on the specific panel questions, as well as demographic questions with the use of your mobile device (via texting) or via a web page.
FDA Meeting Date & Location
Meeting location: College Park Marriott and Conference Center, Hyattsville, MD Date & Time: June 2, 2017, 8:00am - 12:30pm
* Following the FDA meeting, there will be a research update for anyone who is interested (1:30-3:00 pm)