Families fighting rare disease ask for help on #GivingTuesday

Holiday spending: How to make it count

How to help families battling a rare disease affecting 15,000 people + many more

Thanksgiving weekend kicks off the holiday shopping season, and this year charities are joining in on the holiday action. After the chaos of Black Friday, followed by Small Business Saturday and Cyber Monday, holiday shoppers can seize the opportunity to give back for a new holiday trend called, Giving Tuesday.
For two years now, Giving Tuesday has taken place on the Tuesday after Thanksgiving to create a national day focused on giving, similar to how Black Friday and Cyber Monday have become days that are synonymous with holiday shopping.

Interested in seeing how Giving Tuesday should measure up?

• Last year, research indicated that 37% of American adults brave the crowds for Black Friday shopping.
• Forbes reported that $5.5 billion was spent last year during Small Business Saturday.
• Analysts reported total sales of $1.98 billion for Cyber Monday 2012.
• The first annual Giving Tuesday resulted Paypal mobile donations increasing 487 percent higher than the previous year's total number. The total value of those donations increased 228 percent.

There are almost 6,500 organizations partnered with Giving Tuesday. For most organizations, this last push for 2013 donations is vital to the success of the mission they carry out.

Now one organization organized by patients, families and their doctors are urging people to get involved with Giving Tuesday as a way to help give momentum for a cure.

"We all want to give a gift that is meaningful and demonstrates the love we have for our family and friends," says Jennifer Farmer, Executive Director of the Friedreich's Ataxia Research Alliance (FARA). "Giving Tuesday reminds us that a gift can come in the unique form of a contribution to a charity that is making a difference for a loved one or your community. For individuals and families battling a rare disease called Friedreich's Ataxia (FA), you can give the gift of research."

"We are a small organization, but despite this, we have big goals to find a cure. Our research could provide insights into many more diseases related to the neuromuscular system, cardiac system and genetic diseases as a whole. Giving Tuesday provides an opportunity to get us closer to the finish line." continues Farmer.

Friedreich's Ataxia is a genetic, progressive and life-shortening neuromuscular condition for which there is currently no cure. Since the disease affects the neuromuscular system, patients have trouble with coordination, walking and are often bound to a wheel chair. The disease affects 6,000 people in North America and 15,000 people worldwide and every 1 in 100 people are carriers of the compromised  Friedreich's (FA) ataxia gene – yet not many are aware of this.

Through funds already raised, FARA has clinical trials in progress that are showing real promise.

How can you help with Giving Tuesday? 

"With FARA your donation makes a huge impact," says Kyle Bryant, who has Friedreich's Ataxia. "This is an incredible way to be a part of the 'Giving Season' and give something truly meaningful."

Also, when you do support Giving Tuesday, you can go social with #GivingTuesday to share your efforts with the world.

This year, Giving Tuesday will take place on December 3, 2013. For more information about Giving Tuesday, its mission and partners, visit www.givingtuesday.org.

To donate directly to FARA through Giving Tuesday, please visit: givingtuesday.org/partner/fara

ABOUT FARA:

About FARA and how to help support their cause: The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. According to Charity Navigator, FARA currently has the highest rating of four stars.
For more information, visit curefa.org.

Changing lives of people with rare diseases

Downingtown, PA., (January 7, 2013) – Ron Bartek, co-founder and president of the Friedriech's Ataxia Research Alliance (FARA), has been selected as one of 30 heroes who have made clinical, research, advocacy and regulatory contributions over the past 30 years.

 In celebration of the 30^th anniversary of the enactment of the Orphan Drug Act (ODA), a law passed and designed to facilitate the development and commercialization of drugs to treat rare diseases, the FDA Office of Orphan Products Development (OOPD) has selected Bartek and the others for their work in researching and treating rare diseases. 

Bartek was selected for his remarkable work as a family advocate and founder of an organization to advance patient advocacy, research and awareness of a rare disease, Friedreich's ataxia.  Bartek was honored alongside his colleagues during a recognition event on January 7.

"I am humbled and honored to be selected as one of 30 heroes in the battle against rare diseases," said Bartek. "Working closely with other rare disease organizations and having the support of the FDA have been vital in our collaborative effort.  This recognition is something I would never have achieved without the efforts of the entire team at FARA who tirelessly work to raise awareness and research funds for a cure and of the very supportive Friedreich's ataxia families across the country and around the world."

Since assuming the role of president after co-founding FARA in 1998, Bartek, a former 20-year federal executive branch and legislative branch United States government official, has been a champion of public-private partnership across rare diseases. One of FARA's strategies has, and will always be, partnership and collaboration.

"As a rare disease community, we cannot afford to work in isolation; we have to find common ground and share our learnings to advance treatments faster for FA and other diseases," added Bartek.

FARA has been a champion of public-private partnership as a way to bridge some of the resource gaps and challenges in drug development for rare disease. FARA has been working with colleagues at the FDA, National Institutes of Health (NIH), private industry and other advocacy organizations to find new mechanisms and ways to work together. Several FARA-funded discovery scientists have gone on to bring new treatment candidates through the "Valley of Death" of drug development via creative partnerships and funding from multiple organizations, such as NIH and foundations.  This approach has been instrumental in raising critical funds to support research, and establishing FARA as one of the top rare-disease organizations in the world.

In just 15 years, Friedreich's ataxia has gone from a poorly understood and unrecognized disease to one with a robust scientific community and treatment pipeline, including several drugs that are currently in various stages of clinical trials. In fact, a new clinical trial was launched just last week and FARA is hopeful it will bring us one step closer to a treatment or cure for the rare, progressive and life-shortening neuromuscular disease.

"This recognition is coming at such an important time with one of our most promising trials now getting under way," concluded Bartek. "We are certain 2013 will be FARA's most exciting year yet."

In addition to the recognition event, the FDA/OOPD is also planning to highlight its heroes on the FDA website and on posters that will be displayed throughout Health and Human Services agencies, and will also webcast the January 7 event internally.

About Ron Bartek

Mr. Ronald Bartek is the Co-founder and President of the Friedreich's Ataxia Research Alliance (FARA); 4-year member, NIH National Advisory Neurological Disorders and Stroke Council; and former partner and president of a business and technology development, consulting, and government affairs firm. Mr. Bartek's professional experience also includes twenty years of federal executive branch and legislative branch service in defense, foreign policy and intelligence including six years on the Policy Staff of the House Armed Services Committee; four years at the State Department's Bureau of Politico-Military Affairs, including a year as a negotiator on the U.S. Delegation to the Intermediate-Range Nuclear Forces (INF) Treaty talks in Geneva; six years as a CIA analyst of political-military aspects of the East-West balance, including a year as an Intelligence Community representative to the interagency groups charged with U.S. arms control policy; former Director, American Friends of the Czech Republic. Following graduation from the United States Military Academy at West Point, Mr. Bartek spent four years as an Army officer, serving as a company commander in Korea and an Infantry and Military Intelligence officer in Vietnam. He has a Master's Degree in Russian Area Studies from Georgetown University.

About FARA

The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. For more information, visit: www.curefa.org