Dear Friends,
Two young women in my life continue to make me proud everyday in the way they approach and accept the challenges of their life's course. As you know, these are my daughters, Sara and Laura. Since I gave up working over a year ago to focus more fully on their needs and to figure out how to help them gain more independence, I likely have faced one of the tougher challenges of my life. First, I am everyday faced with their physical and health obstacles and there have been many. Second, I am emotionally connected to the frustrations they face as they are losing abilities and having to accept those losses. Finally, I am anxious that there is not a cure TODAY for Friedreich's ataxia. I remember at Sara's diagnosis in 1996 when the doctor said that potential cures would be the year 2000 or beyond; that seemed like a lifetime. Well, never in my wildest dreams did I think that in 2010, I would still be waiting. Little did I understand what it takes to cure a disease.
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Laura, John & Sara |
On September 26, 2010 Sara and I are travelling to Philadelphia to the Children's Hospital to begin a drug trial that will last a couple of months with 5 separate trips to Philly. This is one of several studies that are underway or will be underway in the months to come. Both Sara and Laura will participate in another study here in Rochester next Spring. Finally, a little hope has arrived at our door. Our years of fund raising and contributing have meant something.
On October 10, I am going back to Philadelphia for the Ride Ataxia bicycle ride. I am no bike rider and in fact just borrowed a bike this summer to start riding and to gain the confidence to ride in an event such as this. I am slow and steady! I will set no records and in fact I just hope I won't keel over after the many hill climbs outside Philly. It may be more of a walk with my bike by my side! However, my purpose is not a bike ride, it is to focus on the treasures of my life while helping fund the research.
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The Wonderful Ferrarones, Italy 2010 |
As many of you addressed in this letter have given so much before, my request is not made without hesitation. There are endless ways that friends and family have supported Sara and Laura over these many years. They have benefited from the financial support to research but, more importantly they have been immeasurably blessed by the love, care and thoughtfulness of many.
Please check out FARA's website if you are interested in more info.
Again, many thanks for enduring my years of asking for help. My appreciation is sincere and infinite.
