Here I am again! Twice in a year! lol Hopefully I will not get distracted and will give you my post-2018 report in June. I was going through my Drafts folder yesterday and found my 2017 post-ride Email, unsent! Lordy-Lordy way too much going on in my retirement! :-)
All is ready for The Ride in 9 days. The FARA folks are wonderfully organized and participants will feel well supported. We are about 56% of the FARA goal of $100K. Susan and I are ready to help Friday and Saturday to support the logistics and grunt-work to make the event a success for the folks who attend. We'll be camping at the Lake Solano Campground West of Winters where we'll see the Rupel family for the first time since their FA son Matt's death last Fall. What an amazing young man and such a loss! Sigh FA doesn't care.
Speaking of ready I am as un-ready as in any year so far! lol But I can make it 23 miles, if the wind doesn't kick up to 22mph as it did some years ago! Have faith!
I'm off to speak an evening of quality time with Brianne in 1/2 an hour!
Ta-Ta
Thursday, May 24, 2018
Sunday, May 6, 2018
My last blob was in May 2016 so obviously last year I was oblivious to the opportunity of updating my blog. Brianne was not able to attend last year so I did the 23 mile route and had the pleasure of riding most of the way with FA'er Sean Baumstark. Sean was just a couple of weeks into his first recumbent trike so we made it a social ride (which we are both good at!), breaking no land speed record but did some good sharing.
This year for the 2018 FARA Ride Ataxia NorCal bike fundraiser Brianne again cannot make it. At the beginning of the year she was hit by a bad flu, contracted pneumonia and is still pulling out of that funk. She would love your prayers, good thoughts and even a visit if you are in the area.
I with wife Susan do plan on being there! I will again do the 23 mile route while Susan will be on the road watching after the 12 mile route riders as she has each year. This is Year 9 and we are as excited as on Year 1! Over these years the event has moved from Folsom to Davis and now to Winters but the focus is the same, bring multiple treatments to FA patients like Brianne and Sean. This year's ride is dedicated to FA'er Matt Rupel, an amazing young man who passed this last year. He wasn't able to wait for the treatment. See ride details here, http://fara.convio.net/site/TR?fr_id=1472&pg=entry .
We ARE getting closer to treatments. The MOXIE trials should get a FDA decision in a couple of years, the HDACi is finally out of the lab and moving toward the FDA by the end of the year, there are 4 or 5 gene therapy drug companies surging forward and 2 groups are looking at bone marrow stem cell treatments in the near future (I thought that was still 10+ years out). Go to http://www.curefa.org/pipeline for more details.
So join us for the first time or continue with us my fine and faithful friends from these years past! Sponsor me, Brianne or our Team Blue Skies by going to
http://fara.convio.net/site/TR/Events/General?pg=pfind&fr_id=1472, mail me a check made out to "FARA" (not me) (1921 Alice Dr., Penngrove, CA 94951), or PayPal works too.
We can make a difference for some 15,000 FA'ers in the world, and for Brianne.
Best regards, from Brianne, Susan, Richard and I, members of Team Blue Skies!
Paul
This year for the 2018 FARA Ride Ataxia NorCal bike fundraiser Brianne again cannot make it. At the beginning of the year she was hit by a bad flu, contracted pneumonia and is still pulling out of that funk. She would love your prayers, good thoughts and even a visit if you are in the area.
I with wife Susan do plan on being there! I will again do the 23 mile route while Susan will be on the road watching after the 12 mile route riders as she has each year. This is Year 9 and we are as excited as on Year 1! Over these years the event has moved from Folsom to Davis and now to Winters but the focus is the same, bring multiple treatments to FA patients like Brianne and Sean. This year's ride is dedicated to FA'er Matt Rupel, an amazing young man who passed this last year. He wasn't able to wait for the treatment. See ride details here, http://fara.convio.net/site/TR?fr_id=1472&pg=entry .
We ARE getting closer to treatments. The MOXIE trials should get a FDA decision in a couple of years, the HDACi is finally out of the lab and moving toward the FDA by the end of the year, there are 4 or 5 gene therapy drug companies surging forward and 2 groups are looking at bone marrow stem cell treatments in the near future (I thought that was still 10+ years out). Go to http://www.curefa.org/pipeline for more details.
So join us for the first time or continue with us my fine and faithful friends from these years past! Sponsor me, Brianne or our Team Blue Skies by going to
http://fara.convio.net/site/TR/Events/General?pg=pfind&fr_id=1472, mail me a check made out to "FARA" (not me) (1921 Alice Dr., Penngrove, CA 94951), or PayPal works too.
We can make a difference for some 15,000 FA'ers in the world, and for Brianne.
Best regards, from Brianne, Susan, Richard and I, members of Team Blue Skies!
Paul
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