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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.


Third Party Data Breach

Recently, FARA learned of a data breach at Blackbaud Inc., a third-party data service provider we use for our fundraising efforts. FARA was one of many nonprofits and schools that was impacted by this incident.

Blackbaud informed us that they discovered and stopped a ransomware attack and, with the help of independent forensics experts and law enforcement, successfully prevented the cybercriminal from locking them out of the system and taking full control of their files. However, the attackers were able to remove a backup file that contained some personally identifying information about Blackbaud's nonprofit clients' donors and prospective donors, including those of FARA. Please note that no credit card or bank account information was compromised in this breach. Click HERE to read a full description of the incident on Blackbaud’s website.

Blackbaud believes they have successfully retrieved the stolen data. Furthermore, Blackbaud has firmly expressed to us that based on the nature of the incident, the research performed by them, and information provided by third-party investigators and law enforcement, that they do not believe that any data was or will be misused; or will be disseminated or otherwise made available publicly.

Ensuring the safety of our donors’ data is of the utmost importance to FARA and we make every effort to safeguard your information. FARA’s contractual agreements have always required Blackbaud to keep our constituent information confidential and to have security procedures in place to minimize breaches. As part of their ongoing efforts to help prevent something like this from happening in the future, Blackbaud has implemented changes to further protect your data. Such measures include identifying and rectifying the vulnerability associated with this incident, and confirmation testing by multiple third parties, including the appropriate platform vendors, that the fix withstands all known attack tactics.

Although Blackbaud asserts that there is a very low risk from this breach, should you encounter any suspicious activity that you believe may be related, we recommend you promptly report it to us and to the proper law enforcement authorities. If you have any related questions or concerns, please contact us at (484) 879 6160 or info@curefa.org.
 
 

Monthly Update - July 2020


Dear friends,

I hope you and your family are finding ways to enjoy the summer while also staying safe. At FARA, we continue to advance a number of research projects, advocacy initiatives, and fundraising campaigns. I hope the information in this newsletter serves as one indicator of volume of activity still happening even in a new socially distanced reality. Opportunities to participate include clinical trials, the United Against Ataxia Hill Day, the virtual rideATAXIA Global Challenge, the FA Symposium series, the virtual FARA Energy Ball, and contacting your representatives to encourage funding for the National Institutes of Health. Keep engaging your community and keep us informed by posting on social media and tagging FARA using #cureFA.

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

Read the Full Monthly Update
 

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.

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