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|"The Joneses" August 2011 (from left to right: Zip, Kristin, Ryan, Charlie, Lisa, Owen, Trevor, Taku) |
|(TO DONATE PLEASE CLICK ON THE "GIVE NOW" BUTTON ON THE RIGHTHAND SIDE OF THE SCREEN.)|
My personal blog documenting my swimming aspirations:
Family and Friends,
As some of you already know, two of the four children in our family were diagnosed with Friedreich's Ataxia. Ryan is 27 and was diagnosed when he was 7, Owen is now 21 and was diagnosed when he was much younger. Friedreich’s Ataxia is a rare genetic, degenerative, life-shortening neuromuscular disorder which afflicts about 15,000 people worldwide. Onset of symptoms usually occurs between the ages of 5 and 15.
Friedreich’s Ataxia causes a variety of serious health problems including: progressive muscle weakness and loss of coordination (ataxia) in the arms and legs; vision impairment, hearing loss, and slurred speech; aggressive scoliosis (curvature of the spine); diabetes mellitus or carbohydrate intolerance; fatigue that severely impacts daily life; and, a serious heart condition (enlarged heart — hypertrophic cardiomyopathy).
The progressive nature of this Muscular Dystrophy causes the loss of muscle strength and control which leads to motor incapacitation and the full-time use of a wheelchair -- usually by the late teens or early twenties. The mental capabilities of people coping with Friedreich’s Ataxia, however, remain completely intact. Those of you, who know Ryan, know how deeply passionate he has always been about writing: using his stories to convey his understanding of the world, as a way to remember his childhood and an outlet for his emotions. This relentless disorder has robbed Ryan of his ability to write as effectively as he would like. Most recently, Ryan was hospitalized for a few days with heart complications, but is now back home. Owen is currently living in a group living home down the street from the family home and has been there for about a year. Both Ryan and Owen would like to live someplace that offers more sun and less “dreary” days. Our family has toyed with the idea of having them come "visit" me in sunny, HOT, Phoenix for a few weeks (or more :-)) but this has yet to happen.
Currently there are no treatments or cures for Friedreich’s Ataxia. However, there is a considerable amount of research being done. The Friedreich’s Ataxia Research Alliance (FARA) is a non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure for FA. FARA’s efforts have led to major breakthroughs in the fight against FA, bringing hope and confidence to people who just over ten years ago had none. Supporting FARA not only benefits those suffering from FA, but may also help to solve a host of other conditions both rare and common including Parkinson’s, Huntington’s, Alzheimer’s, ALS, diabetes, and stroke.
Your support will give both our family, and others affected by this disorder the hope we so desperately need. Because FA is so rare, funding through traditional sources has been limited, which makes your contribution even more important. We hope that you will choose to support Ryan and Owen as well as our entire family in our efforts to find a cure for Friedreich’s Ataxia. Research is the only hope.
The Juneau Joneses
Other Ways to Help:
We understand that not all of you are able to donate to this cause, however, we ask that you pass this letter on to your own friends and family, in the hope that they may be able to donate. The goal is not only to raise funds, but also to raise awareness. This is the only hope for a cure - please pass this letter on to others.
As you will see on the donation webpage, I have started a “Team Ryan and Owen Jones” If you have an interest in joining the team, for whatever reason – please send me a personal note and I will help you through this process. In joining our team you will be able to set up your own donation page, as well as raise funds in Owen and/or Ryan's name. Please don't hesitate to inquire about this.
To check out her personal accounts and keep up to date with her swimming, click here:
For more information on FA and what FARA is please check out the following links (you must copy and paste them into a new browser).
Video of FA and FARA:
FA and FARA Brochure: