So now it is 4 days before Tax Day and 7 weeks before May 31st, the 5th annual Ride Ataxia NorCal fundraiser to treat and/or cure FA. My taxes thankfully have been done for some time and the Team Blue Skies website is up and so far we have 3 riders! In the rest of this blog I want to speak to 1) Supporting Team Blue Skies, 2) Advances in FA research and 3) Information on the Ride what might be a bit different this year.
1) I, Brianne, Team Blue Skies, RA NorCal, FARA, the FA families, and the world-wide approximately 20,000 young people whose lives have been rudely re-routed by this life-shortening Friedreich's Ataxia disorder extend a heart-felt thank you to all who will be financially sponsoring Team Blue Skies this year and those that have supported this important work in the past. Drug development takes time and lots of money so we are so very appreciative of your persistence in supporting the drive to rid humanity of Friedreich's Ataxia. So how can you sponsor one or all of us this year? Go to our Team Blue Skies webpage and choose one or more of us to sponsor.
http://rideataxia.kintera.org/faf/search/searchTeamPart.asp?ievent=1099129&lis=0&kntae1099129=83B4061867BD4FC7A630CBBFA987B8C1&team=5857715 Or you can send me a check made out to "FARA". Mail it to 1921 Alice Dr., Penngrove, CA 94951. No donation is too big or small! Thank you, thank you!
2) Now the very loud and measured steps toward FA treatments are resounding through our community! Within 10 years and perhaps as soon as 3 years the researchers believe the first of several treatments will be approved and made available. Just in the past month 2 new drug companies have joined the fight against FA in two of our leading research areas! Right here in our own backyard BioMarin, headquartered in Novato, has licensed the HDACi Inhibitor research and will pump new energy and movement into it. The new drug company AAVLife was just formed to take Dr. Helene Puccio's FA gene therapy onward from mice into humans! Dr. Puccio has just demonstrated FA heart-diseased mice can make a complete recovery even after they were at a mid-point of heart disease progression. For information on these and other FA research directions go to http://www.curefa.org/pipeline.html
3) Here is the 2014 Ride Ataxia NorCal homepage, http://www.kintera.org/faf/home/default.asp?ievent=1099129 , which is full of information. Take a look how last year's routes have been freshened (my 15 mile is now my 17 mile! Oh my!) and a 1 mile course defined close to the vet's building. For me the other possible is that we may have THREE wheelchair trailers in the Ride this year! Brianne of course is riding, Sophia is planning to ride possibly with her baby, and a young man from SoCal, Lucas, may join us as well! That moves us closer to my vision of 6 wheelchair trailers in one Ride!
So let's see? Oh yes! Training! LOL My friend Dave and I are getting out about once every 1 - 2 weeks for 22 or so miles. I'm trying not to over-train. :-)
Best regards to all!
