It's now a week later, Sunday again, and The Ride is still with me! lol At the end of Ride Day, May 5, I noticed I had a small muscle spasm in my lower back but I figured, eh, it'll go away with a hot shower. Not. It coalesced into a Very Sharp back pain which has followed me the whole week. I finally figured out 3 Advil every 4 hours would tame it but I don't like drugs, even Advil, so I've been off and on trying to see if it had gone away. It hasn't yet. Oh well, The Ride was worth it! Right now the overall total sponsorship level is at $95, 500! WhooHoo! And still going up!
See pics taken by my wonderful wife Susan on Facebook:
https://www.facebook.com/media/set/?set=a.3949204050727.176155.1298855103&type=3
- Here are 4 video clips:
Izzy's friend Sophia:
http://www.youtube.com/watch?v=6P-8u2lFNg4
Owen's
friend Teyo http://www.youtube.com/watch?v=jdHqHhVX30w
First
video of Brianne and Sophia on the road
http://www.youtube.com/watch?v=WPMK-aQkMck
Second
video of Brianne and Sophia on the road:
http://www.youtube.com/watch?v=wY5U1XN_Mj0
-
Here's a great writeup on Kyle and Ride Ataxia:
http://www.theaggie.org/2012/05/03/uc-davis-graduate-fights-friedreichs-ataxia/
-
Morning newscast:
http://www.youtube.com/watch?v=J9dpTVJIb4A&feature=youtu.be
(try to ignore me in the background)
- And a bit on what Friedreich's
Ataxia is:
http://www.curefa.org/whatis.html
Sunday, May 13, 2012
Sunday, May 6, 2012
Now that I posted the blog from 2011 a few moments ago, on to 2012!
May 5, 3rd Annual Ride Ataxia NorCal FA Research Fundraiser
In the months leading up to the event I had been riding about 23 miles a week, with unfortunately periodic long periods of inactivity due to competing life priorities and some weather issues. But I was feeling reasonable about the 15 mile ride again with Brianne behind me because we had done reasonably up to the point her wheel bearing failed last year.
So Wednesday I pulled out all 4 of the trailers I now have to remind myself which I will bring. I decided the last two I acquired will need some work before being ready for use so the two original trailers got air in the tires and a safety check. As last year my daughter Brianne and a FAer from Lakeport, Sophia, are riding to raise their own FA research money. I say that's only fair! ;-) Because Sophia's dad Eric has a bum knee right now and my Brother-in-law Richard had already decided to ride with us (as did my step-son Jarod!) I tapped him to pedal Sophia. BUT in return because he really wanted to ride the 30 mile course I agreed on Sunday if the creek didn't rise we would do that together.
By 11am Friday we are on our way to Winters, CA to hope we could catch a first come first served campsite which we did. As last year we were at the US Bicycle Hall of Fame registration by 4pm and began meeting all the wonderful people involved as FARA staff, volunteers and riders in this 3rd Annual Ride Ataxia NorCal fundraiser. At 6pm the reception started and the floodgates opened as riders raising $300 or more came in to celebrate with us! We enjoyed ourselves so much we missed out 9pm curfew at the campground and had to walk in on foot. lol
We were back the next morning at the Davis Vet Center at 7:30am to be ready for the 15 mile ride start at 10am. I needed to assemble/mount the trailers and wheelchairs in time for my riders. At 10am we led the 15 mile riders out of the parking lot and we were on our way! By this time perhaps I should have mentioned the wind coming from the NNW was blowing at 22mph! Oh, yes! And just thank the Lord it wasn't coming out of the west! And though the day was to warm up to 80 "later" it was Chilly for a lot of the ride. Many riders including Brianne had not brought jackets (she did have a heavy shawl/cape thing) assuming the morning would be warm-ish. When we got on the main road and cleared the city cover Katie Bar the Door! lol The wind kept blowing Brianne's cape loose and when the wind gusted I could feel the trailer front lift a bit as Brianne was pushed back and I would lose 3 - 4 mph immediately. Our max speed was 11+mph and our min speed was a measley 3.8mph on the way out! Our route was straight west 5.5 miles and then turned into the wind for 2.5 miles; longest 2.5 miles I've every pedaled! Whoo!
We rested and visited a bit at the rest stop before heading back. The ride back went much better than the ride out, and a good thing, I had used much of my reserves getting us to the halfway point. Of course the first section south we almost had to brake with the wind behind us and the two riders acting as sails, and the rest of the way back we were able to maintain a higher mph, although our max speed going back east was 12mph. Once back we enjoyed a wonderful Outback lunch and the company of all the fellow riders. The 30, 55 and 68 mile riders really had it rough on their routes. Jarod and his friend Christy thought their course was challenging enough. ;-)
We were last out before Felicia and the Bryant's so we joined Richard at Appleby's for a salad dinner. While sitting there I was hit with a massive back thigh cramp - it didn't appreciate me sitting nor the cool inside air. We got back to camp before curfew and got to bed very early. This morning we called Richard to report the winds were still 11mph and my legs felt like jelly; so there's a rain check on the 30 mile ride. :-)
I want to sincerely thank all the people that thought of us, prayed for us and sponsored our rides and the fight against FA. We are winning! Just a couple of months ago the first human safety test was started in Milan, Italy on a drug that in FA blood raises the level of the problem protein Frataxin to asymptomatic levels! And Brianne has been on another experimental drug for a year now that will shortly start clinical trials toward FDA approval. There are something like 10-ish trials in process right now. We are still 5 - 10 years out to stopping the progression of FA but in the world of diseases and disorders that's close!
This fundraising event is not yet over! Last year they were at $87,000 the day after the Ride and ended at $103,000; today the total is $89,000 so if you have not sponsored me and would like to just go to https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1012679&supId=351303087 and click in the upper right hand corner!
God bless you all and stay healthy!
May 5, 3rd Annual Ride Ataxia NorCal FA Research Fundraiser
In the months leading up to the event I had been riding about 23 miles a week, with unfortunately periodic long periods of inactivity due to competing life priorities and some weather issues. But I was feeling reasonable about the 15 mile ride again with Brianne behind me because we had done reasonably up to the point her wheel bearing failed last year.
So Wednesday I pulled out all 4 of the trailers I now have to remind myself which I will bring. I decided the last two I acquired will need some work before being ready for use so the two original trailers got air in the tires and a safety check. As last year my daughter Brianne and a FAer from Lakeport, Sophia, are riding to raise their own FA research money. I say that's only fair! ;-) Because Sophia's dad Eric has a bum knee right now and my Brother-in-law Richard had already decided to ride with us (as did my step-son Jarod!) I tapped him to pedal Sophia. BUT in return because he really wanted to ride the 30 mile course I agreed on Sunday if the creek didn't rise we would do that together.
By 11am Friday we are on our way to Winters, CA to hope we could catch a first come first served campsite which we did. As last year we were at the US Bicycle Hall of Fame registration by 4pm and began meeting all the wonderful people involved as FARA staff, volunteers and riders in this 3rd Annual Ride Ataxia NorCal fundraiser. At 6pm the reception started and the floodgates opened as riders raising $300 or more came in to celebrate with us! We enjoyed ourselves so much we missed out 9pm curfew at the campground and had to walk in on foot. lol
We were back the next morning at the Davis Vet Center at 7:30am to be ready for the 15 mile ride start at 10am. I needed to assemble/mount the trailers and wheelchairs in time for my riders. At 10am we led the 15 mile riders out of the parking lot and we were on our way! By this time perhaps I should have mentioned the wind coming from the NNW was blowing at 22mph! Oh, yes! And just thank the Lord it wasn't coming out of the west! And though the day was to warm up to 80 "later" it was Chilly for a lot of the ride. Many riders including Brianne had not brought jackets (she did have a heavy shawl/cape thing) assuming the morning would be warm-ish. When we got on the main road and cleared the city cover Katie Bar the Door! lol The wind kept blowing Brianne's cape loose and when the wind gusted I could feel the trailer front lift a bit as Brianne was pushed back and I would lose 3 - 4 mph immediately. Our max speed was 11+mph and our min speed was a measley 3.8mph on the way out! Our route was straight west 5.5 miles and then turned into the wind for 2.5 miles; longest 2.5 miles I've every pedaled! Whoo!
We rested and visited a bit at the rest stop before heading back. The ride back went much better than the ride out, and a good thing, I had used much of my reserves getting us to the halfway point. Of course the first section south we almost had to brake with the wind behind us and the two riders acting as sails, and the rest of the way back we were able to maintain a higher mph, although our max speed going back east was 12mph. Once back we enjoyed a wonderful Outback lunch and the company of all the fellow riders. The 30, 55 and 68 mile riders really had it rough on their routes. Jarod and his friend Christy thought their course was challenging enough. ;-)
We were last out before Felicia and the Bryant's so we joined Richard at Appleby's for a salad dinner. While sitting there I was hit with a massive back thigh cramp - it didn't appreciate me sitting nor the cool inside air. We got back to camp before curfew and got to bed very early. This morning we called Richard to report the winds were still 11mph and my legs felt like jelly; so there's a rain check on the 30 mile ride. :-)
I want to sincerely thank all the people that thought of us, prayed for us and sponsored our rides and the fight against FA. We are winning! Just a couple of months ago the first human safety test was started in Milan, Italy on a drug that in FA blood raises the level of the problem protein Frataxin to asymptomatic levels! And Brianne has been on another experimental drug for a year now that will shortly start clinical trials toward FDA approval. There are something like 10-ish trials in process right now. We are still 5 - 10 years out to stopping the progression of FA but in the world of diseases and disorders that's close!
This fundraising event is not yet over! Last year they were at $87,000 the day after the Ride and ended at $103,000; today the total is $89,000 so if you have not sponsored me and would like to just go to https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1012679&supId=351303087 and click in the upper right hand corner!
God bless you all and stay healthy!
Web blogs live forever apparently. My last Ride Ataxia blog was the SoCal ride in December 2010. I missed telling you here about the 2nd annual 2011 RA NorCal ride that occurred in Davis, CA. so here the post-ride Email blurb I sent out:
-------------------------------------
May 14th, 2011 Ride Ataxia NorCal
We had a great time at the 2nd Annual Ride Ataxia NorCal in Davis, California on Saturday! Over 300 riders participated and so far the Ride has raised over $87,000! WheeHoo (And money is still coming in! It's not too late to sponsor the ride if you haven't yet!)!
For those of you on Facebook go here for some pics and blogs.
https://www.facebook.com/RideAtaxia
https://www.facebook.com/photo.php?fbid=10150182140361375&set=a.10150182140311375.303241.516956374&type=1
https://www.facebook.com/photo.php?fbid=1971458976073&set=a.1971416375008.2120308.1530967096&type=1
https://www.facebook.com/media/set/?set=a.179176222109105.48065.156998930993501
http://thegorecycle.blogspot.com/2011/05/rideataxia-norcal-wrap-up.html
We drove to Winters with our camper on Friday morning, got it set up and
drove the 35 minutes to the Davis Veteran's Memorial building at 3:30pm to
help the pre-registration starting at 4pm. Organized social chaos ensued,
with Felicia knowing every team's unique details to help the process along
and everyone getting re-acquainted all around the table. At 5:30pm we closed
shop and went to the Bicycle Hall of Fame museum where Brown snd Caldwell
hosted a wonderful get together with Outback Steakhouse provided hors
d'oeuvres and drinks. Wonderful casual re-acquainting and meeting time.
The morning was cool and some clouds were overhead but spirits were high as
we started to gather at 7:30am for a biker's breakfast and last minute
registrations. Highlights of the day:
- It was great to have all the 2010 Team FARA RAAM riders there (Kyle, Sean,
Mike and John), and to see how encompassing they were with everyone. I puff
up with pride when I see how much more than just athletes these young men
are.
- The Helms' came down from Missoula, Montana for this one day ride! Wow! It
was so good to see all of them and to meet the grandparents.
- I got to meet a load of wonderful new people including the Penston's and
the Prettyman's!
- The food and drinks provided by business friends of Greg Mazeres were over
the top just like last year! Kudo's to Greg and cohorts!
- I want to mention the Hartigan's as an example of all the volunteers doing
SAG, rest stops,etc. I saw Vicki briefly at pre-registration, period. She
and all the others worked tirelessly to make the Ride the outstanding
logistical and supportive ride it was. Kudos, Kudos and Kudos!
- My bit this year (and probably for years to come) focused on the
wheelchair trailers. Sophia's dad Eric pedaled her in Phillip Bennett's
memorial wheelchair trailer and I pedaled Brianne in hers, both of us on the
15 mile course. We had just enough time (with Felicia holding the start for
a few minutes) to get Brianne and Sophia "mounted" and comfortable in their
"bikes". Off we went with both trailers working flawlessly. My only worry
was that the girls would get bugs in their teeth because of their big smiles
as the wind blew their hair and they could look eye-to-eye with the other
riders. Both were very comfortable and reported the ride was very stable (as
long as the dads didn't run the trailer off the road forgetting it stuck out
to each side of the bike! lol). The wind was ablowin' stiffly in our faces
so we worked pretty hard on the first half of the ride. My lowest speed was
6mph and when the wind died momentarily I was up to 11 - 12mph. I had
Brianne's FM transmitter/receiver system so I could harass her as I was
riding (and maybe warn her of bumps and turns); she kept asking if I was all
right because of the loud breathing sounds coming into her ear! lol The far
end of the 15 mile course was at a fire station next to the airport. The
break was welcomed. Brianne and I made it only a few hundred feet back down
the course when I discovered one of the trailer's wheel bearings had
self-distructed! Darn! Well, she made it half of the 15 miles! I called our
special priority SAG truck (Susan) and soon Brianne and the disabled trailer
were on their way back to the finish line. I finished the 15 mile course
trailing Sophia so I could evaluate Phillip's trailer's performance.
- There were two other interesting bike trailering rigs out that day also.
The Helms brought a custom commercial recombent trailer with attached
optional pedaling they wanted to try out (guesstimate price tag $2K-ish)
with Dylan which looked like it performed well. Sienna rode with mama in a
standard child's trailer. Another family rode a tandem with an attached bike
behind that with a standard child's trailer behind that! No tight turns for
them! lol
- After the Ride back at the Veteran's Building I gave wheelchair trailer
rides in the parking lot for Dylan, Sienna, Izzie, and Owen! A fun time!
- Outback provided a delectable lunch of ribs with all the trimmings, and
carrot cake and/or cookies for dessert. Patrick Kruk and his crew are just
beyond the best! I say it over and over but they blow me away coming out to
volunteer their time to help us like this, just because! Our kids of course
capture their hearts once they are there but they came out just to support
the community! How ultruistic is that?! I love 'em every one!
- Once that shindig wound down (about 4pm) about 2 dozen of us retired to
Woodstock Pizza to continue the celebration! Susan and I left about 6:30pm
and the rest were still going strong. We were in bed in the camper by 8:30pm
(normally 11-ish) and only intermittently heard the rain pattering on the
roof through the night.
Another wonderful partnership effort between FARA (Kyle/Felicia) and local
supporters resulting in $87K+ for FA research! A note is that these regional
Ride Ataxia fundraisers cannot be put on by FARA alone. If we want a
treatment to happen the soonest for our children then these $87K - $150K+
riding fundraisers need our active volunteer participation to continue.
Leadership and organizing, being a support person volunteer, and/or putting
together teams to participate and tapping the network of your personal
supporters is what it takes to pull off this event. We are all busy but
involving your FAer (and ataxian for our non-FA members, because some of the
coming treatments may make a difference to them as well) in this event (or
one you are doing) will give them a great social outlet, a bonding
experience, and a sense of some control in this FA life. Each participant,
and especially the ataxian participants, can see how their efforts are
directly accelerating FA research. Sorry if I'm lecturing but I could see
the excitement and satisfaction in the faces of all the ataxians that were
there.
---------------------------------
-------------------------------------
May 14th, 2011 Ride Ataxia NorCal
We had a great time at the 2nd Annual Ride Ataxia NorCal in Davis, California on Saturday! Over 300 riders participated and so far the Ride has raised over $87,000! WheeHoo (And money is still coming in! It's not too late to sponsor the ride if you haven't yet!)!
For those of you on Facebook go here for some pics and blogs.
https://www.facebook.com/RideAtaxia
https://www.facebook.com/photo.php?fbid=10150182140361375&set=a.10150182140311375.303241.516956374&type=1
https://www.facebook.com/photo.php?fbid=1971458976073&set=a.1971416375008.2120308.1530967096&type=1
https://www.facebook.com/media/set/?set=a.179176222109105.48065.156998930993501
http://thegorecycle.blogspot.com/2011/05/rideataxia-norcal-wrap-up.html
We drove to Winters with our camper on Friday morning, got it set up and
drove the 35 minutes to the Davis Veteran's Memorial building at 3:30pm to
help the pre-registration starting at 4pm. Organized social chaos ensued,
with Felicia knowing every team's unique details to help the process along
and everyone getting re-acquainted all around the table. At 5:30pm we closed
shop and went to the Bicycle Hall of Fame museum where Brown snd Caldwell
hosted a wonderful get together with Outback Steakhouse provided hors
d'oeuvres and drinks. Wonderful casual re-acquainting and meeting time.
The morning was cool and some clouds were overhead but spirits were high as
we started to gather at 7:30am for a biker's breakfast and last minute
registrations. Highlights of the day:
- It was great to have all the 2010 Team FARA RAAM riders there (Kyle, Sean,
Mike and John), and to see how encompassing they were with everyone. I puff
up with pride when I see how much more than just athletes these young men
are.
- The Helms' came down from Missoula, Montana for this one day ride! Wow! It
was so good to see all of them and to meet the grandparents.
- I got to meet a load of wonderful new people including the Penston's and
the Prettyman's!
- The food and drinks provided by business friends of Greg Mazeres were over
the top just like last year! Kudo's to Greg and cohorts!
- I want to mention the Hartigan's as an example of all the volunteers doing
SAG, rest stops,etc. I saw Vicki briefly at pre-registration, period. She
and all the others worked tirelessly to make the Ride the outstanding
logistical and supportive ride it was. Kudos, Kudos and Kudos!
- My bit this year (and probably for years to come) focused on the
wheelchair trailers. Sophia's dad Eric pedaled her in Phillip Bennett's
memorial wheelchair trailer and I pedaled Brianne in hers, both of us on the
15 mile course. We had just enough time (with Felicia holding the start for
a few minutes) to get Brianne and Sophia "mounted" and comfortable in their
"bikes". Off we went with both trailers working flawlessly. My only worry
was that the girls would get bugs in their teeth because of their big smiles
as the wind blew their hair and they could look eye-to-eye with the other
riders. Both were very comfortable and reported the ride was very stable (as
long as the dads didn't run the trailer off the road forgetting it stuck out
to each side of the bike! lol). The wind was ablowin' stiffly in our faces
so we worked pretty hard on the first half of the ride. My lowest speed was
6mph and when the wind died momentarily I was up to 11 - 12mph. I had
Brianne's FM transmitter/receiver system so I could harass her as I was
riding (and maybe warn her of bumps and turns); she kept asking if I was all
right because of the loud breathing sounds coming into her ear! lol The far
end of the 15 mile course was at a fire station next to the airport. The
break was welcomed. Brianne and I made it only a few hundred feet back down
the course when I discovered one of the trailer's wheel bearings had
self-distructed! Darn! Well, she made it half of the 15 miles! I called our
special priority SAG truck (Susan) and soon Brianne and the disabled trailer
were on their way back to the finish line. I finished the 15 mile course
trailing Sophia so I could evaluate Phillip's trailer's performance.
- There were two other interesting bike trailering rigs out that day also.
The Helms brought a custom commercial recombent trailer with attached
optional pedaling they wanted to try out (guesstimate price tag $2K-ish)
with Dylan which looked like it performed well. Sienna rode with mama in a
standard child's trailer. Another family rode a tandem with an attached bike
behind that with a standard child's trailer behind that! No tight turns for
them! lol
- After the Ride back at the Veteran's Building I gave wheelchair trailer
rides in the parking lot for Dylan, Sienna, Izzie, and Owen! A fun time!
- Outback provided a delectable lunch of ribs with all the trimmings, and
carrot cake and/or cookies for dessert. Patrick Kruk and his crew are just
beyond the best! I say it over and over but they blow me away coming out to
volunteer their time to help us like this, just because! Our kids of course
capture their hearts once they are there but they came out just to support
the community! How ultruistic is that?! I love 'em every one!
- Once that shindig wound down (about 4pm) about 2 dozen of us retired to
Woodstock Pizza to continue the celebration! Susan and I left about 6:30pm
and the rest were still going strong. We were in bed in the camper by 8:30pm
(normally 11-ish) and only intermittently heard the rain pattering on the
roof through the night.
Another wonderful partnership effort between FARA (Kyle/Felicia) and local
supporters resulting in $87K+ for FA research! A note is that these regional
Ride Ataxia fundraisers cannot be put on by FARA alone. If we want a
treatment to happen the soonest for our children then these $87K - $150K+
riding fundraisers need our active volunteer participation to continue.
Leadership and organizing, being a support person volunteer, and/or putting
together teams to participate and tapping the network of your personal
supporters is what it takes to pull off this event. We are all busy but
involving your FAer (and ataxian for our non-FA members, because some of the
coming treatments may make a difference to them as well) in this event (or
one you are doing) will give them a great social outlet, a bonding
experience, and a sense of some control in this FA life. Each participant,
and especially the ataxian participants, can see how their efforts are
directly accelerating FA research. Sorry if I'm lecturing but I could see
the excitement and satisfaction in the faces of all the ataxians that were
there.
---------------------------------
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