Jumping For
A Cure

 

       How You Can Help

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All proceeds from "Jumping for a Cure", will be donated to Friedreich's Ataxia Research Alliance (FARA) to benefit research in Friedreich's ataxia (and other sporadic ataxia).   Please join us in our effort by participating in our show or by making a generous donation.

Thank-you,

Trisha Hussey and Jon Knight
Sandy, Utah

Sue and Joe Kittel
Loveland, Colorado

 

 

 

 

 

 

Trisha Hussey, Aaron, and Allie drawing the winning raffle tickets at JFAC 2003.

Additional Information on Friedreich's Ataxia and Current Research:

Symptoms:  Friedreich’s ataxia is a rare, progressive, recessive genetic disease of the nervous system affecting only about 1 in 50,000 people in the USA.  In FA, ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath - the insular covering on all nerve cells that helps conduct nerve impulses.  The first symptom to appear is usually difficulty in walking, or gait ataxia. Other symptoms that usually develop are; foot deformities, muscle weakening and wasting, loss of sensation in the extremities, dysarthria (slowness and slurring of speech), unusual fatigue, nystagmus (rapid, rhythmic, involuntary movements of the eyeball), scoliosis (a curving of the spine to one side), and cardiomyopathy (enlargement of the heart). Aaron already exhibits all of these symptoms and has used a wheelchair for the last 11 years.  Allie is just beginning to show some of the  symptoms. 

Research: 
Frataxin Study:  FARA is currently funding a research project at the Scripps Research Institute in LaJolla, California, that involves collaboration between excellent scientists at Scripps and at nearby CalTech. The research focuses on increasing frataxin protein production which would be extremely therapeutic in Friedreich's ataxia. Thus far, the scientists have demonstrated an apparent ability to introduce molecules that work to increase frataxin protein levels significantly. They have had these positive results in two types of experiments. In one type of experiment, the scientists introduced the molecules to FRDA cell lines they obtained from the Coriell Repository's collection of about fifty such cell lines. In the second experiment, the scientists introduced their molecules to the fresh blood samples sent them. In both experiments, the scientists observed positive results. The scientists now want to know whether the positive results on the blood cells of one family can be extended to the general FRDA population. Click here to read the "best news we have ever had" press release on this study, dated August 20, 2006

Idebenone Drug Trial:  Phase 2 of a clinical trial has just been completed at National Institutes of Health testing the effectiveness of a new drug, Idebenone, to treat and hopefully stop the progression of FA.  Allie spent part of her summer vacation (2006) as one of 48 children in phase 2 of that drug study.  Results of this study will be out mid November 2006.  

Please Help Us:  Much has been accomplished, and even though the research community feels that "we are close to a viable treatment”, it can't be soon enough for some our our friends with FA.

Friedreich's Ataxia Research Alliance (FARA)
2001 Jefferson Davis Highway
Suite 209, Arlington, Virginia USA 22202
Tel (703) 413-4468, Fax (703) 413-4467

FARA is a 501(c) (3), IRS-recognized non-profit charitable organization 
Website:  http://www.FAResearchAlliance.org