It is Sunday PM, June 3, the day after the Ride Ataxia NorCal Research Fundraiser Bike Ride! My body feels strange, like it is asking me "What did you do to me again??". LOL I'm not sure if it is riding the 23 miles (which wasn't really that bad), the increasing heat of the ride (which really wasn't that bad), the two days labor to help put The Ride together and take it apart, (which really wasn't that bad) or sitting mostly under shade in 98 degree heat at the post-event get together at the Berryessa Brewing Company (it really was that bad). Or perhaps it was the accumulation of all of that. :-) As always I response to my body with "Get over it!". It has worked so far.
After sleeping at Brianne's Wednesday night (4 nights a week these days) I got home at 10:30am to finish helping load the trailer and pull it out out the side yard. Each year our packing prep time gets shorter and our "at the moment" packing gets more immediate, and so we pulled out of the driveway around 3pm arriving at the Lake Solano Campground about 4:30pm. Lake Solano is a wide spot (reservoir) in Putah Creek formed by a diversionary dam just downstream from Lake Solano Campground.
In a change from previous years the Rupel family has sold their trailer and so there was no welcoming committee. The fundraiser this year is dedicated to their FA son Matt who died last Fall from infection complications. He was a wonderfully intelligent and humorous young man. Our campsite was a pull-through so in short time we were set up. We had a quiet evening next to Putah Creek with the appropriate number of creek-side bugs.
Friday morning found us in Winters at 9:30am set to lay out the courses.
- With plenty of volunteers we knocked that out by Noon and had lunch together at the Putah Creek Cafe catching up since last we met! The camaraderie of the group warms my heart.
- At 1:30pm we gained access to the community center hall and set up the tables, chairs and all the trappings needed for a successful ride.
- During that time I had fun with the center's coordinator, a 40-year veteran chef now apparently gliding toward retirement. I got squirted in the face by their hallway fountain and then noticed it never shut off completely. What?! She informed me she had called a number of times to city hall to no avail. So I told her to call with the information that a rabid environmentalist was there and threatening to do a picket with TV cameras on Monday if it was not fixed! lol Within a half hour a city plumber arrived. Ya gotta love the government.
- At 3:30pm Susan and I returned to the cool trailer for a respite. As we came in I stopped at the camp host to request an exception to the 9pm gate-closing promising we would be in by 9:30pm and would honk as we came by their rig.
- 6pm found us in Davis at the Woodstock Pizza four an informal before-the-ride get-together for all and sundry! It was so nice! FA'ers Kyle, Sean, Sam, Dylan, and Sienna were there with families and friends. We got to meet wonderful new people that are motivated by their friendships with FAmilies, neat!
- Slid back in camp at 9:15pm (yes!) with a toot to the camp hosts and after a little TV slumbered off at 11pm-ish with the clock set for 6:15am.
- I groggily awoke at 5am listening hazily to a "beep-whosh" sound! What IS that?? What is breaking or has broken in or around the trailer to explain that noise?? Is water flooding through the trailer?? Could it be Susan's Iphone? Susan whispers, "Peacock", of which they have quite a few in the campground. So we listened as they walked past the trailer giving voice to all that would listen. Susan later suggest it could have been a Canadian goose.
- We are at the community center about 7am. This year there is no official photographer so Susan went off to document the start of the 52 mile at 7:30 while I wash the truck's window for her SAG paint and figure out how to remove the new bike rack.
- The hour is a blur until ride-time! I'm riding with my sister-in-law who has been exercising to beat the band! And I haven't ridden for more than 6 months! I may eat her dust!
- The morning is beautiful and we should be back in the air conditioned center when the temperature hits 84, works for me! S-I-L Karen led and I kept up. The 23 miles flew by. On the third leg we were put into the Southbound wind at about 10mph and we weren't having as much fun. But for the last leg the wind was a crosswind and we had a net downhill ride. Sweet!
- At the center Karen went for her camera to help Susan and I tried to visit each of my FA "nieces and nephews". It wasn't a good day for Sean Mazeres and Ashley is fighting a bladder infection but I met Nina and checked in with others! Family and friends gathered together to help push forward for a cure!
- About 1pm-ish we started the tear-down finishing about 2pm. Off we went to the brewing company for about 2 hours pleased that we could sit with the Helms' family and their friends. Finally the sun shifted onto our backs and we gave it up. Back to the trailer where we ate leftovers and just did nothing. :-)
- This morning we got up at 9am and at 10am broke camp. It was already over 80. Gone by 11am and home at 12:30pm.
I will be thanking the sponsors of Brianne's Team Blue Skies in another document but let me repeat it here, Thank You all that have supported us and all the 15,000+ FA'ers around the world! You are making the research possible that will release these children and adults from the grip of FA! Thus far this year's ride gained $93K for FA research ($98K by Tuesday) including almost $2.1K from Team Blue Skies! This money might support 3 grants to researchers exploring new FA treatment possibilities giving them the opportunity to prove their hypothesis sufficiently to interest a drug company (with the deep pockets necessary to carry on the research).
And the fundraiser is not over! :-) Go to the Team Blue Skies webpage at http://fara.convio.net/site/TR/Events/General?team_id=3974&pg=team&fr_id=1472 if you are so moved.
Thanks for joining me through my blog this year! See you next year!
Sunday, June 3, 2018
Thursday, May 24, 2018
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
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
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
Sunday, June 5, 2016
It is Sunday PM of 5/6/16 and we are back home! What can I say? IT WAS HOT! lol
We got to the Solano County Park at Noon on Friday and just dropped the trailer in the campsite so we would not be late to help set up tables and chairs at the Winters Community Center in of course, Winters. The temperature hit 103 degrees that afternoon!
Turns out Winters is only 5 minutes from the campground so since we were early we stopped at a Garage Sale! Susan snagged a two-level garden work bench for $3 and I picked up a street-legal propane tank for $2. In spite of the heat the weekend has started out great!
The community center folks were friendly and the layout was good so in half an hour we established seated eating for 200+. So then we went back to the trailer (A/C was on) and relaxed until time to help set up for the Bicycling Hall of Fame reception at 5:15pm. The evening was nice with many re-connections to the FAmily and guiding riders to the registration area to pick up their packets. Cleanup was fast and we found ourselves back at camp by 8:30pm enjoying conversation within feet of the Putah Creek with the Rupeloton Team. Retired to our rolling bungalow thinking of the next day forecast of 97 with less than a 5mph wind (yess!!).
Ride Ataxia biking events are fairly unique to the orphan/rare disease community and aren't very comparable to the everyday biking event. Yes those folks get to know one another but there is an intimacy and family-ness to RA NorCal that I don't think one can match in those other bike events. Saturday morning found us up at 7am and ready to go easily by 8am. Susan would SAG the 10 mile route and Brianne and I would ride it but neither set of us would be on the road until 10am. So we showed up at 8:30, Susan went off to secure her supplies and SAG instructions while I de-trucked and assembled my (heavy) 27-speed road-altered mountain bike and the wheelchair/trailer combo. Brianne was expected by 9:30am and I was ready for her by 9:15am. At 9:35am I texted "ETA?" and received the reply "tough morning, 15 - 20 minutes". A few minutes later I received the text "no go". Somehow Brianne's morning had gone sideways and she wouldn't make the ride.
An important note here is that for all of us "temporarily able bodied" folks it is difficult to appreciate the fine and delicate balance that exists between a "good" day and a "bad" day for disabled folk. Something in the alignment of the sun, moon and stars trembled for Brianne between Friday evening and Saturday morning to cause her to cancel an experience she had prepared and fundraised for for months.
Well, things happen and we move on. About this time Felicia finds me (precious young woman that she is) and asks am I ready 'cause its time? "Sure" says I so I ride around the building, unhook the wheelchair/trailer and join the 10 mile group. Felicia gives us all the cautions and safety tips (why did she look at me all through her spiel??) and sent us on our way.
The day is "warm", 80 - 85 degrees already but I can still feel a little coolness in the wind, thankfully. In the first half mile I remember and am reminded of the pluses and minuses of my bike. I like the 27 speeds that give me shifting sensitivity as the road rises and the custom handlebar risers that allow me to straighten up to stretch my back (this is an event and not a race after all) but I can feel the drag of the extra bike weight and the fatter tires than my early '80's Schwinn road bike. Ah, the ying and yang of life.
I begin thinking if I should do the 23 mile ride instead since Brianne is not a weight factor any more but by the time I am at mile 3 or 4 I can feel the sucking-out effect of the heat (there is no more "cool" in the wind) on my energy and I could imagine the backside of the 23 mile route in an hour with the increasing heat and decided no, not this year in this heart (last year Brianne broke her leg and I did do the 23 mile route.).
I arrived at the rest stop with Susan taking pictures. Izzy and her mom Zoe were on hand greeting the riders plus Diane Bryant (Kyle's mom) plus others. After a half an hour I launched back toward home base. I believe I average about 17mph which for me is pretty good.
Back at the community center Outback Restaurant had prepared a wonderful lunch of ribs, chicken and veggies! Also present were two FA drug companies (Horizon and Reata) both of which have drugs in clinical trials so I was able to talk to both of them about their research. After helping to clean up we went back to the trailer and hid from the heat. It was hot! We had considered staying an extra day but after seeing the forecast, 77 for RP and 93 for the davis area, it was no contest and we were home at Noon today.
Thank you to all the sponsors of both myself and Brianne! RA NorCal has raised $84K so far and Brianne's Team Blue Skies has exceeded its goal of $3,000 and more is expected! This will help keep the momentum going! Remember you can go to
http://www.curefa.org/pipeline to see the FA research status
and our page http://fara.convio.net/site/TR/Events/General?team_id=2885&pg=team&fr_id=1261 for updates.
Best regards,
We got to the Solano County Park at Noon on Friday and just dropped the trailer in the campsite so we would not be late to help set up tables and chairs at the Winters Community Center in of course, Winters. The temperature hit 103 degrees that afternoon!
Turns out Winters is only 5 minutes from the campground so since we were early we stopped at a Garage Sale! Susan snagged a two-level garden work bench for $3 and I picked up a street-legal propane tank for $2. In spite of the heat the weekend has started out great!
The community center folks were friendly and the layout was good so in half an hour we established seated eating for 200+. So then we went back to the trailer (A/C was on) and relaxed until time to help set up for the Bicycling Hall of Fame reception at 5:15pm. The evening was nice with many re-connections to the FAmily and guiding riders to the registration area to pick up their packets. Cleanup was fast and we found ourselves back at camp by 8:30pm enjoying conversation within feet of the Putah Creek with the Rupeloton Team. Retired to our rolling bungalow thinking of the next day forecast of 97 with less than a 5mph wind (yess!!).
Ride Ataxia biking events are fairly unique to the orphan/rare disease community and aren't very comparable to the everyday biking event. Yes those folks get to know one another but there is an intimacy and family-ness to RA NorCal that I don't think one can match in those other bike events. Saturday morning found us up at 7am and ready to go easily by 8am. Susan would SAG the 10 mile route and Brianne and I would ride it but neither set of us would be on the road until 10am. So we showed up at 8:30, Susan went off to secure her supplies and SAG instructions while I de-trucked and assembled my (heavy) 27-speed road-altered mountain bike and the wheelchair/trailer combo. Brianne was expected by 9:30am and I was ready for her by 9:15am. At 9:35am I texted "ETA?" and received the reply "tough morning, 15 - 20 minutes". A few minutes later I received the text "no go". Somehow Brianne's morning had gone sideways and she wouldn't make the ride.
An important note here is that for all of us "temporarily able bodied" folks it is difficult to appreciate the fine and delicate balance that exists between a "good" day and a "bad" day for disabled folk. Something in the alignment of the sun, moon and stars trembled for Brianne between Friday evening and Saturday morning to cause her to cancel an experience she had prepared and fundraised for for months.
Well, things happen and we move on. About this time Felicia finds me (precious young woman that she is) and asks am I ready 'cause its time? "Sure" says I so I ride around the building, unhook the wheelchair/trailer and join the 10 mile group. Felicia gives us all the cautions and safety tips (why did she look at me all through her spiel??) and sent us on our way.
The day is "warm", 80 - 85 degrees already but I can still feel a little coolness in the wind, thankfully. In the first half mile I remember and am reminded of the pluses and minuses of my bike. I like the 27 speeds that give me shifting sensitivity as the road rises and the custom handlebar risers that allow me to straighten up to stretch my back (this is an event and not a race after all) but I can feel the drag of the extra bike weight and the fatter tires than my early '80's Schwinn road bike. Ah, the ying and yang of life.
I begin thinking if I should do the 23 mile ride instead since Brianne is not a weight factor any more but by the time I am at mile 3 or 4 I can feel the sucking-out effect of the heat (there is no more "cool" in the wind) on my energy and I could imagine the backside of the 23 mile route in an hour with the increasing heat and decided no, not this year in this heart (last year Brianne broke her leg and I did do the 23 mile route.).
Back at the community center Outback Restaurant had prepared a wonderful lunch of ribs, chicken and veggies! Also present were two FA drug companies (Horizon and Reata) both of which have drugs in clinical trials so I was able to talk to both of them about their research. After helping to clean up we went back to the trailer and hid from the heat. It was hot! We had considered staying an extra day but after seeing the forecast, 77 for RP and 93 for the davis area, it was no contest and we were home at Noon today.
Thank you to all the sponsors of both myself and Brianne! RA NorCal has raised $84K so far and Brianne's Team Blue Skies has exceeded its goal of $3,000 and more is expected! This will help keep the momentum going! Remember you can go to
http://www.curefa.org/pipeline to see the FA research status
and our page http://fara.convio.net/site/TR/Events/General?team_id=2885&pg=team&fr_id=1261 for updates.
Best regards,
Wednesday, June 1, 2016
Good morning! It is 3 days from RA NorCal!! And of course we are doing everything except getting ready for the ride! lol We are having company over next week so the house is getting a once-over cleaning and projects of course have radiated out from there. So far I've got a sliced finger and a pulled groin muscle, neither of which should bother my Saturday once I'm pedaling.
Wonderful news! Team Blue Skies has exceeded its goal!! Thank you so very much to all the supporters!!! You can see this at
http://fara.convio.net/site/TR/Events/General?team_id=2885&pg=team&fr_id=1261
which is showing 99% but there are several checks enroute to FARA to put us over.
This evening I'll pull out the mountain bike (27 gears!) and the trailer/wheelchair (still attached from last year) to get them aired and lubed for Saturday. All the straps to keep Brianne safe and comfortable should be there so poof, ready (I hope)! If there's time we'll pull out the travel trailer as well to start throwing a few things in it. We'll camp a few miles West of Winters next to a quiet river Friday, Saturday and maybe Sunday.
We are looking forward to Saturday! Another posting to you next week.
Wonderful news! Team Blue Skies has exceeded its goal!! Thank you so very much to all the supporters!!! You can see this at
http://fara.convio.net/site/TR/Events/General?team_id=2885&pg=team&fr_id=1261
which is showing 99% but there are several checks enroute to FARA to put us over.
This evening I'll pull out the mountain bike (27 gears!) and the trailer/wheelchair (still attached from last year) to get them aired and lubed for Saturday. All the straps to keep Brianne safe and comfortable should be there so poof, ready (I hope)! If there's time we'll pull out the travel trailer as well to start throwing a few things in it. We'll camp a few miles West of Winters next to a quiet river Friday, Saturday and maybe Sunday.
We are looking forward to Saturday! Another posting to you next week.
Monday, April 25, 2016
I was just doing some Ride Ataxia NorCal housekeeping on their webpage and decided to click on the "Featured Video" at the bottom of the page.
http://fara.convio.net/site/TR?fr_id=1261&pg=entry
I am impressed! Not only is it an excellent professional product that is an easy watch of under 5 minutes but it actually captured the close up and personal nature of being at the ride! If you have a few minutes give it a watch!
Oh, in the last crowd scene on the steps Susan and I are on the far right. :-)
http://fara.convio.net/site/TR?fr_id=1261&pg=entry
I am impressed! Not only is it an excellent professional product that is an easy watch of under 5 minutes but it actually captured the close up and personal nature of being at the ride! If you have a few minutes give it a watch!
Oh, in the last crowd scene on the steps Susan and I are on the far right. :-)
Sunday, April 24, 2016
It seems "serial thinking" is a characteristic I am picking up (couldn't be my years! lol) and I just saw I had not acknowledged all those wonderful and caring people that donated to FARA for Brianne and I last year and earlier years. Tsk-tsk! You are our angels! Without you FARA would not have been able to accomplish the wonderful progress they have! I thank you and thank you!
FARA is THE model to follow in the orphan/rare disorder/disease world. 9 clinical trials in-process is an amazing feat with more coming through Basic and Translational research behind those. And it goes back to the generosity and caring of all of you.
And these dollars have rippled and will continue to ripple indirectly into the other mitochondrial disorders like Parkinson's, Huntington's, ALS, and Alzheimer's. How leveraged has your generosity become! Kudo's to you all!
FARA is THE model to follow in the orphan/rare disorder/disease world. 9 clinical trials in-process is an amazing feat with more coming through Basic and Translational research behind those. And it goes back to the generosity and caring of all of you.
And these dollars have rippled and will continue to ripple indirectly into the other mitochondrial disorders like Parkinson's, Huntington's, ALS, and Alzheimer's. How leveraged has your generosity become! Kudo's to you all!
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