Team FARA 2019

So much love
So much love

Full Ascent

Who we are:              

SCOTT:

I am passionate about the environment, hiking and my dogs. I am fortunate that my life is such that I get to hike amongst the Berkshire mountains in Massachusetts with my two dogs, YoYo and YaYa every day. I first started thinking about climbing the largest mountains shortly after being diagnosed with cancer. When I started to discuss my next adventure with Rosie (Rocio), it was a no brainer to combine it with a fundraiser for something that has effected one of my favorite familes. I have had the pleasure of knowing Scott and Susan (their daughters are Grace and Stella) for almost 6 years now. Their family has taught me so much about what it means to persevere, to love and to live life to its fullest. When I am down, I think about how those two amazing young girls tackle each and every day with dignity. I have never heard either of them complain for one second about the hand they have been dealt. They are called the "Warrior Sisters" for a good reason. They are the strongest, bravest most amazing young ladies I have ever met. Truly they are the definition of what it means to be a hero. I climb for them and for all of those living each day with FA. As I train for the hardest climb I have ever done, I think about the daily challenges Grace and Stella face and I remember that we all have mountains to climb.

ROCIO:

1. Growing up, was terrified of participating in sports, let's just say I'm not one to pick athletic activities. Running? I run late and I run cold. 

2. I thought going to the beach outside your hotel was loving the outdoors. Actually, I still think that counts.

3. I love junk food, but eat microgreens to add some nutrition to daily diet. A couple of weeks ago I went to Costco and picked up NINE 48 count Ferrero Rocher boxes. For myself. Oh and I already had a few boxes at home.

4. Although I’m a procrastinator, I’m extremely driven. I think the two have coexisted beautifully within me and it’s what’s carried me through life in a very patient, yet determined manner.

5. Haven’t really camped. Or hiked. See 1 and 2.

If you’re here to support a challenge, then I believe you’ve come to the right place! I’m the opposite of those that climb and run and do physical “challenges.” This will be everything that is not me. A perfect challenge.

My inspiration and reason for climbing are two little girls, Grace and Stella.

Grace, 10 and her sister, Stella, 8 are both diagnosed with Friedreich's Ataxia.

I’d like for those with FA to have the luxury I have of having a healthy life. Pain free. Enjoying the foods they love. Seeing and experiencing life. Many with FA will not get that chance. But we can help them. Us. The procrastinators. Us the lovers of junk food. We can donate, we can hike, we can challenge ourselves to donate just a little more.
Maybe I can serve as an inspiration for a true challenge. At the end of the day, climbing Kilimanjaro is an easy one.
The hard one is finding a cure.

 

What we are doing:

As team Full Ascent, we will be climbing Mount Kilimanjaro from September 8th-September 15th, 2019 to raise money and awareness for/of this under funded disease. We will reach the summit and plant a flag in honor of everyone effected by this disease. This climb was the brainchild of longtime friends Rocio Ildemaro and Scott Osleeb. Others are encouraged to join us on our climb for a cause or just join our team and raise money for a very worthy cause without having to climb a mountain. Get your fundraising hat on and/or your hiking boots out. Let's tackle this mountain like the brave people effected by FA tackle their obstacles.

Why we are doing it:

This is Grace and Stella's (pictured) story...

"In September 2015, Grace was diagnosed with hypertrophic obstructive cardiomyopathy which is a thickening of the heart wall into the path of flowing blood. This life threatening condition prevents Grace from strenuous athletic activity and was a major shock for our family to learn to live with. Even with treatment, symptoms such as loss of balance, strength and coordination persisted leading us to schedule meetings with multiple cardiologists and neurologists in early 2016.

In June of 2016, the cause of Grace's heart condition was confirmed through chromosomal testing to be a rare genetic mutation called Friedreich's Ataxia (FA). Grace is one of only 5,000 people in the United States diagnosed with FA. This progressive, life-shortening condition affects the nerves, muscles and heart. Symptoms include Grace's heart condition (cardiomyopathy), loss of strength and mobility, scoliosis and severe fatigue due to a mutation of a protein needed to properly utilize energy at the cellular level. Cognition is NOT affected and remains fully intact. Those living with FA ultimately require the full time use of a wheelchair.

We decided to test her sister Stella, to find out if she too is positive for the disease. We were devastated to learn that in addition to Stella having Type 1 Diabetes, she also has Friedreich’s Ataxia. Her symptoms are not exactly the same as Grace, and she does not yet show any sign of the heart condition. People progress differently and with various degrees of severity. Loss of coordination and balance are often the first noticeable symptoms.

Grace and Stella have taught our family to live each day with integrity, as they bravely meets the challenges of being 6th and 3rd grade students at Trinity Episcopal School. My daughter's physical abilities decline with each passing season. Therefore, today presents the best opportunity to use their bodies and get the most out of each experience. Both girls use their capabilities to be bright lights in our school community and a wonderful sisters. They are best friends and amazing support systems for each other. We call them the Warrior Sisters.

The Friedreich’s Ataxia Research Alliance (FARA) is a small, but critical support system to families challenged by this devastating condition. A national, public non-profit, FARA unities families and provides them with the latest opportunities to participate in clinical trials and coordinate funding for the research necessary to one day develop a treatment and possibly a cure.

To that end, FARA developed the rideATAXIA program in January 2007 when Kyle Bryant began a 2,500 mile, 60 day cycling journey from San Diego to Memphis, TN in order to raise awareness and funds for FA. The program has grown into a unifying and empowering program of hope organizing family friendly rides at locations all across the country. You can learn more about rideATAXIA online at: www.curefa.org/rideataxia-blog

We extend our heartfelt gratitude to you for taking time to bring attention to Grace and Stella’s journey. Your effort will benefit brave children today and in the future by helping to develop the next generation of research that will unlock the mystery of this condition. Also important, your work inspires hope in the hearts of our beautiful little girls."

We have joined Team FARA to redefine what is possible when we work together towards a common goal- treatments and a cure for Friedreich's ataxia (FA). Join us in supporting the urgent pace of the research. Donate. Together we will cure FA!

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.

 

 

 

 

 

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