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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.

 

FARA Announces Recipients of the 2017 Ataxian Athlete Initiative (AAI)

DOWNINGTON, PA-- The Friedreich's Ataxia Research Alliance (FARA) is proud to announce the recipients of this year's Ataxian Athlete Initiative (AAI). The AAI is a unique program that provides adaptive cycling equipment to people with ataxia who have demonstrated a strong desire to stay healthy and fit despite their progressive disabilities.

Friedreich's ataxia (FA) is a rare disease that affects balance and coordination and has symptoms such as vision and hearing loss and often results in life shortening heart complications.

This year, the AAI was sponsored by UVA Sun Systems, The Melting Pot, Catrike, The FA Project, The Texas Irish Foundation and The Burrows Hill Foundation. The Burrows Hill Foundation generously provided over 70% of the funding for the 2017 AAI.

"The Burrows Hill Foundation is so proud to team with such a worthy and well established program such as the AAI. We are aware how important it is for those with ataxia to stay active and healthy and are honored to be able to help provide adaptive cycling equipment to these worthy applicants."

Joni Moore
Joni Moore shares her story HERE

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.

"I am in love with riding my new handcycle, receiving it has honestly changed my life," said 2017 grant recipient Natchez Hansen. "I am building muscles and getting in shape for Orlando’s Ride Ataxia event November 12."

The AAI has provided equipment for 42 individuals since 2009. In 2017, the AAI funded 9 grants for adaptive cycling equipment to athletes from 7 states and 2 countries including:
Ashlea Smith of Aliquippa, PA,
Jacob Tompkins of Tivoli, NY,
Joni Moore of Superior, WI,
Justin Hernandez of Graham, TX,
Katie Hook of LaPorte, IN,
Kevin Henry of Jackson, MO,
Natchez Hanson of Palm Coast, Fl
and Savvas Nicolaou of Limasoll, Cypress

Visit http://curefa.org/aai for more information and to view more photos of past recipients. The next application cycle begins in Spring 2018.

Girl tells author of ‘Wonder’ how book hit close and closer to home

Claire Juip meets R.J. Palacio as a winner of Letters About Literature contest.
Fifth-grader Claire Juip meets R.J. Palacio as a winner of Letters About Literature contest.
R.J. Palacio’s book “Wonder” has inspired millions of kids. It’s the story of a disfigured boy named Auggie who attends school outside his home for the first time as a fifth-grader. And it has prompted many discussions about courage, friendship and choosing to be kind.

For reader Claire Juip of Grosse Pointe, Michigan, the book’s message didn’t hit home the first time she read it. But two life-changing events caused Claire to reread it and reflect on it for the Library of Congress’s 2017 Letters About Literature contest.

The first event was finding out that her older brother, Jake, was diagnosed with a rare genetic disorder called Friedreich’s ataxia (FA).

Read the full article HERE

Friedreich’s Ataxia “Voice of the Patient” report

FARA is proud to release the Friedreich’s Ataxia “Voice of the Patient” report; a unique summary of direct testimony and survey responses from individuals living with Friedreich’s Ataxia (FA). This report is based on the proceedings surrounding the Externally Led Patient Focused Drug Development Meeting held on June 2, 2017 in Hyattsville, MD. The goal of the meeting was to give FA patients, and their families, friends and caregivers a forum to discuss their perspectives on living with the disease: what symptoms patients experience, how it affects their lives, what concerns them about the disease, their opinions on current and future treatment options, and experiences with research studies and clinical trials.

This meeting, and the report, represent important accomplishments and milestones for our community.

  • This was the largest FA meeting ever held with more than 400 people participating in person or online; including >20 FDA representatives, 25 drug company representatives and >350 FA patient and family participants.
  • It was the first time FA patients and other members of the FA community had an opportunity to communicate directly with representatives of the Food and Drug Administration.
  • Important themes and insights emerged that can inform drug development and regulatory decision making, such as the conclusion that “while the majority of patients noted that balance, dexterity and fatigue affected their lives the most now, most patients’ greatest concern for their future is the development/ progression of cardiomyopathy in the future, because it is life shortening”.

This document faithfully summarizes the testimony, comments and survey responses shared by individuals living with FA and their family members and caregivers.

We are very grateful to FDA for giving us the opportunity to hold this meeting, and for taking the time to participate and listen to our community. We hope that regulators and companies developing therapies for Friedreich’s ataxia will read this report and better understand the great unmet medical need of FA, the impact it has on patients and what patients seek in terms of treatment. This, in turn, will help companies develop therapies that affect the aspects of disease most important to patients, and regulators to approve those therapies with the greatest impact on patients.

We are grateful to all the individuals in the FA Community who participated in this meeting through providing testimony (both oral and written), attending the meeting, watching online and/or responding to the survey questions. We believe that your engagement in this process provided huge insight into the disease ,which will help the drug development community develop effective therapies.

The report can be read at  http://curefa.org/pdf/news/FA-Voice-of-the-Patient.pdf

A recording of the meeting in its entirety can be found at  https://www.youtube.com/watch?v=Va1D4SqrSfw
 


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10th Annual Friedreich’s Ataxia Symposium at CHOP

CHOP FA Sympoium 2017

For more information about the Symposium, please Click Here.

For registration information, please Click Here.

Fitchburg lawyer battling rare disease: ‘I want to walk’

Nick Carbone
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.

Read more HERE

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