Wednesday, November 27, 2013

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

To donate directly to FARA through Giving Tuesday, please visit:


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

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