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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.


NAF and FARA will be holding their second Hill day on September 10, 2020



The National Ataxia Foundation (NAF) and FARA will be holding their second Hill day on Thursday, September 10, 2020, to raise awareness about ataxia and support legislation that directly impacts our communities. In addition to the scheduled meetings NAF and FARA will have with US Senators, we are asking members of both communities to flood the hill with correspondences (calls, emails, social media posts) that day! Here is how you can take part!

Save the date to join an advocacy webinar on Wednesday, September 2 at 7 pm EST. At that time, members from NAF and FARA will review our priorities and review how you can make your voices heard.

Register for the September 2 Webinar

A quick highlight of the issues we are currently following are:

  • National Ataxia Awareness Day Resolution: International Ataxia Awareness Day is celebrated on September 25. NAF and FARA are asking for a resolution to also recognize that date as National Ataxia Awareness Day. Designating September 25 as National Ataxia Awareness Day will elevate the awareness needed to improve the lives of the persons and families affected by Ataxia and can help accelerate development and access to effective treatments.
    • A Republican Co-Sponsor is Needed for our Resolution! If you have a Republican Senator in your state please Contact Them about Co-Sponsoring this Resolution. Please contact Brigid Brennan at brigid.brennan@curefa.org if you have any questions or potential Republican candidates.
  • Increased funding for the NIH and FDA: Elected officials will be working on appropriations for our government partners at the NIH and FDA in September. These agencies are vital to our drug development program and need the resources to appropriately manage the demands of COVID in addition to all the other important research programs they review.
  • Community Home Health and Telehealth Policies: In the early weeks and months of the COVID-19 public health emergency, Congress and the Administration took important steps to ensure patients have access to essential care while the nation grappled with controlling the spread of the virus. Specific time-limited regulatory flexibilities have removed significant barriers to care and improved access for the 30 million Americans living with a rare disease or condition including Ataxia. However, these flexibilities are at risk of going away when the public health emergency ends. We urge policymakers to recognize how these flexibilities have benefited members of the rare disease community and consider which policies should be kept in place after the public health emergency ends.
  • Creating Hope Reauthorization Act: This bill will permanently authorize the Pediatric Priority Review Voucher (PRV) program which will further the opportunity to spur innovation in rare and neglected diseases that disproportionately impact children.
  • Rare Disease Congressional Caucus: The Rare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists, and industry), and creates opportunities to address roadblocks to the development of and access to crucial treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Find Out if your Representatives are members of the Rare Disease Caucus. Thank your Representatives that are members and Invite those that are not to join.

 

Strong Partnership Funds the 2020 Ataxian Athlete Initiative (AAI) for People with Ataxia

The Friedreich's Ataxia Research Alliance (FARA), the Burrows Hill Foundation, Catrike, The Texas Irish Foundation, and UVA Sun Systems have partnered once again to offer adaptive cycling equipment through Ataxian Athlete Initiative (AAI). The AAI is a unique program providing adaptive cycling equipment to people with ataxia who have demonstrated a strong desire to stay healthy and fit despite their progressive disabilities.

"Since 2011, Catrike has supported the AAI at FARA to provide trikes to people living with Ataxia. We are proud to support an initiative that promotes an active lifestyle for people of all abilities, said Mark Egeland, GM, Catrike. www.catrike.com

Ataxia is a debilitating neuro-degenerative disease affecting children and adults. Friedreich's ataxia (FA) is the most common of inherited ataxias, affecting balance and coordination and has symptoms such as vision and hearing loss and life-shortening heart complications.

“The Ataxian Athlete Initiative is one of the highlights of our year. We are inspired and motivated by the recipients’ stories, and we are proud to provide continued support,” offered Scott Carson, Texas Irish Foundation. texasirishcycling.com/texas-irish-foundation

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.

A 2020 AAI recipient, Noah Griffith from Alabama, said “My disability may change how I stay active, but it can’t stop me from doing so. Having a trike means still enjoying physical activity. That is something that when I was diagnosed, I didn’t think I’d do again.” This year, the AAI was sponsored by Catrike, UVA Sun Systems, The Texas Irish Foundation and The Burrows Hill Foundation. The Burrows Hill Foundation generously provided over 60% of the funding for the 2020 AAI.

Sam Hill, from The Burrows Hill Foundation www.burrows-hill.org, added, “The Burrows Hill Foundation is so grateful to be a part of the important work that the AAI is doing. It is very beneficial for Ataxia patients to stay active, and the AAI does a phenomenal job of helping make that possible.”

The AAI has provided equipment for 73 individuals since 2009. In 2020, the AAI funded 11 grants for adaptive cycling equipment, including 10 Catrikes and one handcycle. The recipients are: Carrie Bollinger of Colorado Springs, CO, Christine Bielski of Fort Meyers, FL, David Riley of Windcrest, TX, Jacob Thompson of Minneapolis, MN, Luis Chicol Sipac of Santa Fe, NM, Mary Englund of Portland, Oregon, Noah Griffith of Salem, Alabama, Orrin Forsyth of Garden City, Michigan, Rodney Cook of Bellevue, Ohio, Sean Sommerville of Walnut Creek, California, and Ziyad Halawani of East Norriton, Pennsylvania.

Visit curefa.org/aai for more information and to view more photos of past recipients. The next application cycle begins in Spring 2021.
 

PTC Therapeutics will be hosting an Informational Patient Webinar on July 28th


PTC Therapeutics will be hosting an Informational Patient Webinar on July 28th at 7pm for those interested in learning more about PTC-743, a candidate molecule for the treatment of Friedreich's ataxia. The clinical trial for PTC-743 will be international and include clinic sites in Australia, Brazil, Canada, the E.U., and the U.S.

Please email info@curefa.org if you are interested in attending this Webinar.

Monthly Update - June 2020


Hello friends,

As we move into summer and the country works through a phased reopening, academic and clinical researchers are coming back online with social distancing measures in place. For many academic researchers, this means lab activities beginning to resume but not at full capacity, and many lab teams working in staggered schedules to reduce the number of staff in a space at any one time.

Our Collaborative Clinical Research Network (CCRN) sites are beginning to see patients in person again for both clinical and research visits. During the first months, they will continue to work at a reduced volume and with new practices and procedures in place to protect staff and patients. We encourage you to contact your site to learn how best to proceed. Whether you are involved in ongoing research or considering participating in a new study, your coordinator can discuss options for in-person versus telemedicine visits.

Thank you for your ongoing support of FA research ...

Read the Full Monthly Update

FA Research Update


Hello friends,

As we move from spring to summer and parts of the country begin their phased reopening, I wanted to update you on the status of academic and clinical research in FA. Throughout the time of closures due to COVID-19, we have remained in touch with FARA funded academic and clinical researchers to understand their challenges and offer support.

Currently, both academic and clinical researchers are starting to come back online with social distancing measures in place. For many academic researchers, this means lab activities beginning to resume but not at full capacity. We anticipate that many lab teams will be working in staggered schedules to reduce the number of staff in a space at any one time.

Additionally, our Collaborative Clinical Research Network (CCRN) sites are beginning to see patients in person again for both clinical and research visits. This will be at reduced volume and with new practices and procedures in place to protect staff and patients. We encourage you to contact your site to learn how best to proceed. Whether you are involved in ongoing research or would like to consider participating in a new study, your coordinator can discuss options for in-person versus telemedicine visits. For studies that require in-person visits, some topics you may wish to discuss are:

  1. What are the onsite measures in place to keep staff and patients safe during in-person visits?
  2. Can I wear my own personal protective equipmet (PPE) or will the study provide this?
  3. Will I need to be tested for Covid-19 prior to a visit? If so, how will that be arranged?
  4. Are there any location changes to where the study is being conducted?
You can find the contact information for coordinators at each of the CCRN sites HERE. Thank you for your support of FARA and FA research.

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