Wednesday, May 15, 2013

Shout Out to @CureFA_Org ~ Help Find a Cure

I’m taking a quick time-out from writing to be human, and utilize my meager platform to tell you all about this organization that blows my mind.

For the past few years, I have had the opportunity to work alongside Ron Bartek and his amazing group at FARA for a charity golf tournament. And every year I wish I could shout to the world how important it is to find a cure for these children and adults alike. Friedrich’s Ataxia has no cure. And we need to find one. That’s why FARA exists.

FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.

FARA's Strategy

FARA focuses on grant making for FA research and building collaborations with organizations dedicated to advancing treatments for FA. Due to the progressive nature of the disease and the promise of treatments in development, there is urgency to our efforts. Directing attention and resources to FA research and partnering with others that share this commitment, FARA believes it can help bring forward effective treatments and a cure for FA.

Read more HERE.

What is Friedrich’s Ataxia?

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. Late onset FA (LOFA) can occur anytime during adulthood. FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.

Signs and Symptoms
  • loss of coordination (ataxia) in the arms and legs
  • fatigue - energy deprivation and muscle loss
  • vision impairment, hearing loss, and slurred speech
  • aggressive scoliosis (curvature of the spine)
  • diabetes mellitus (insulin - dependent, in most cases)
  • a serious heart condition (enlarged heart - hypertrophic cardiomyopathy)

Read more HERE.

I could go on and on about this, telling you about the families I have met and their stories, but I won’t. Just know that this is a cause in need of attention.

Ways to Help:

Advancing scientific discoveries into treatments that improve health and quality of life for people with FA can be accelerated by your contribution to and participation in fundraising activities such as individual donations, grassroots fundraisers and corporate partnership and sponsorship.

Since its inception in 1998, FARA has raised over $10 Million for FA research. These funds directly supported some of our milestone achievements such as understanding the underlying cause of the disease and discovery of potential treatments. Our challenge is to accelerate the evaluation of potential therapies and keep our treatment pipeline full of diverse treatments that slow, stop and reverse FA.

Fundraising not only provides valuable financial resources, but it increases public awareness of FA, and builds our community.

With Your Help We Will Find a Cure


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