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                    Please Join Our Team
and Say "Happy Birthday" by
Raising Research Dollars for Friedreich’s Ataxia
MDA Stride & Ride - Saturday January 27, 2007
“A” Team Captains:  Aaron and Allie Kittel
Colorado Mills Mall
                                   14500 W. Colfax Av.
                                    Lakewood
, Colorado

You CAN help us find a cure for Friedreich’s Ataxia – FA is a rare, genetic, neuromuscular, life-shortening disease.  For most, progressive loss of muscle strength and control leads to motor incapacitation and the use of a wheelchair.  The mental capabilities of people coping with FA, however, remain intact.  There is currently no known treatment or cure for this life-threatening disease.

How to Donate -- Please make checks payable to:  MDA/Seek A Miracle and mail to:

    Sue Kittel, 1416 Antero Dr., Loveland, CO  80538
 
*100% of all money raised through MDA/Seek a Miracle will go to Friedreich’s Ataxia research.

Dear Friends and Family,

    T
wo of our children have a rare neurodegerative disease: Friedreich’s ataxia.  Many of you know Aaron and Allie, and have witnessed the progression of this relentless degenerative disease.  We wish we didn’t need to write to you today asking for your help.  It is heartbreaking to see our children lose their physical health and mobility.  Will you please help us by donating (any amount), or better still “join our team” and collect a few donations yourself?
    This year MDA will designate all the money our team raises for FA research.  By coincidence, "Stride and Ride" in Denver falls the day between Aaron’s 30th and Allie’s 15th birthdays.  We think it will be a great birthday present for both of them to see friends and family join together in this great cause!
    Won't you p
lease help our children?  Allie as a freshman in High School is beginning to have difficulty with balance and endurance Aaron, who has used a wheelchair for 11 years, is becoming more physically disabled as the months roll by.  While this all seems very sad, we are NOT without HOPE that together we CAN make a difference.  Please join us in this fundraising event and if you are inclined we would invite you to pray with us for a cure for Friedreich’s ataxia,

            Thank you from the bottom of our hearts - Sue and Joe Kittel - December 2006

 This is how you can help:

            1. Sponsoring Aaron (in his ride) or Allie (in her walk).  Please make checks payable to: MDA/Seek a Miracle (or)

            2. Joining our team and collecting donations from others to fund at least 5 minutes of research ($325.00 minimum) and, if you like, walking with us Saturday January 27, 2007.  Call to sign up: 970-669-9866 or Email Sue

We are entering an exciting era of Friedreich’s Ataxia Research - 5 Promising trials are due to take place in the next year:

1)
      Dr. Joel Gottesfeld – Scripps Institute – This compound is a modified HDAC Inhibitor.  When applied to cell cultures and white blood cells from FA patients and family members, it appears to increase frataxin protein production.  In a lab setting, the frataxin protein was increased to the point where it went above carrier status.  This is the BIG one!  At least $3 million is needed to complete this trial from start to finish.
2)      NIH in Bethesda, MD - The Idebenone Phase II trial was concluded and the results have just been published.  Phase III trial is being planned for the US, having already opened in Europe.  (Allie participated in Phase 1 and Phase II as one of 48 children nationwide).
3)
      Pilot Study of EPO is Underway in Austria – has been shown to increase frataxin expression in vitro. 
4)
      UCLA (and other various sites) - The Phase II trial of MitoQ is targeted for winter 06-07 – directs antioxidants specifically to the mitochondria, hoping to alleviate some of the oxidative stress, which leads to healthier cells.
5)      Dr. Guy Miller – EPI-A0001 Edison Pharmaceuticals plans to begin the trial of its extremely promising compound by early 2007.  If successful, the FA patients would have more energy, be less fatigued and their cells would not die as a result of programmed cell death (apoptosis).


Aaron and Ori, December 2006