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

DONATE NOW

1: I have BIG NEWS! 2: I realize that’s a lame title.

I mean… How exactly do you title a post in which you’re doing this:

And this:

Because I heard from THIS GIRL RIGHT HERE:

2 Examples of Showing vs Telling

Because this subject never gets old…

You can say, “I enter the trashed attic…”

OR:

I enter the attic that had long been abandoned to time. Sheetrock lay free and broken at the base of frames that used to separate the space into two rooms. A single metal chair sits beside a support beam, the grey legs rusting in the damp air. In the areas where I can see the hardwood, beneath torn-up remains of a mattress, broken toys, and discarded aerosol cans, rests at least an inch of dust. Not a single footprint mars the surface.

You can say, “I walk down a forest path…”

Misty vs The Universe ~ Part 3

Welcome back, ya’ll!! Bet you’re excited to see the conclusion to my plane drama, yes?

To recap, I’m sitting between stale breath guy and creepy staring guy.

Couldn’t go without showing his face one more time.

Okay. Where was I? Oh.

My flight gets delayed.

Misty vs The Universe ~ Part 2

Welcome back! In cased you missed it, I posted the first part of this story yesterday, so go catch up!

Okay, where were we?

There was this guy:

Then I’m seated next to stale-breath guy in the middle seat of the teeny-tiny coach-class row tweeting my pain to anyone who will listen.

Now, you’re probably dying to know how in the hell the Universe could have made things worse for me? Can’t imagine it? Oh, come on. You’re WRITERS! If you were the Universe playing a practical joke, ha ha it’s so funny, what would you do to snarky ol’ me?

Would you… Possibly…