Tuesday, October 12, 2010

A Bike Ride Completed & A Staggering Grand Total!

I want to send a huge congratulations to Margaret for not only finishing her bike ride to support Friedreich's Ataxia (FA), but for kicking some serious butt! She rode ten very hilly miles in well under and hour...and still looked cool doing it. Sadly, my pain has been pretty out of control lately (I'll write more about that later) - it was bad enough this weekend to stop me from being able to travel to Philly to cheer her on. Although I couldn't be there physically, I hope Margaret could feel me with her on that bike. I'm so proud of her!
I also wanted to extend a tremendous thank you to all of our friends and family who so generously contributed to fundraising. Margaret's initial goal was to raise $4,000 for FA Research, and are you ready for this? She ended up collecting a grand total of....

(drum roll, please?)


If you're anything like me, you're speechless. One mom riding for her two beautiful daughters...and look what came of it. I pray that this is the money that's needed to help us find a cure. If you wish to donate still, her fundraising page is still open and any little bit goes a long way. Just as I shared Margaret's initial letter introducing her endeavor, I thought I'd end by sharing her post-ride letter. Enjoy...

Dear Friends and Supporters of the Ride Ataxia;

I have been overwhelmed with support from you all.  Thank you for giving from $10 to $5000!  I was showered with your donations and at this point my total stands at over $22,600!  The event exceeded its $125,000 goal also.  You can see that Team Ferrarone made a good contribution toward that event goal.

I was so happy to be joined by my son, John, for the two days in Philadelphia.  Although we missed his girlfriend, Maya, we had a good time together and his support was very appreciated.  I also got to meet up with old friends who are in this fight for a cure with our family.  So many came, families, friends and those affected by FA.  Many “FAers” rode recumbent bikes and I was really awed by that.  This was not an easy ride and the hills were as promised, KILLERS!  As my one friend said as she crossed the finish line…”I will never do that again”!  I have a whole new idea of what good training might have meantJ  I did fine though and finished the course in good time.  I was a little wobbly when I got off my bike, however.  Attached are two pictures; one of me and John before the race and another of Terry and Marilyn Downing (right of pic) and two of their friends, after our finish.  And no Tom K, there is no YouTube footage to share!

As an update, Sara did not qualify for the UPENN study and she was a bit disappointed in that.  Her neurologist, David Lynch, of whom I can say nothing but positive, has ideas for giving her the drug in an open label status.  So now we have health insurers to manage through the process.  We stay ever positive though and hope that there is a “cocktail” of drugs that will bring the disease to a halt or minimally slow it down. 

The Ride Ataxia began with one young man who has become an inspiration to so many who suffer with FA.  I am attaching a link to a documentary (www.theataxian.com) that was completed on Kyle Bryant.    Although Kyle walks a bit, he is now in a wheelchair.  His onset of the disease was later than that of my two daughters but, he knows the challenges and has done so much for the cause.  Kyle participated in the Race Across America this summer…3000 miles in grueling conditions over 9 days.  Please watch, you will love him and you will be inspired!  I give him credit here because he is a hero to me and to everyone who meets him.  Thanks Kyle.  

So ends the saga of Ride Ataxia Philly 2010.  I can’t thank you all enough for your cheers, prayers, good wishes and for giving from the heart.  I hope I can do this again next year albeit, in better shape and a little less intimidated with the whole idea.  Bless you all for blessing us.

Margaret, Bob, John, Sara and Laura Ferrarone

I also want to say Happy Anniversary to my amazing parents, Judy and Mark! They've been together since high school and that's incredibly inspiring to me. Here's to 4 more decades...


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