Tuesday, June 4, 2019

Tuesday morning and the weekend is already becoming a blur! :-) And my body is almost my own again. So I can and should roll out this blog.

Life if you let it is such an adventure! Last Tuesday another chapter in my life officially closed when I sold our 1988 34' Mallard motor home. 
- Ah the short memories of risking life and limb in that thing! lol The first time we took it out camping on the coast, after 20 minutes it would only go 20 - 30 mph. Plugged fuel filter. Then we took it out again after a rain to the coast and as the 18,000lb behemoth hurtled down one of the coastal hills at close to 55mph we saw the road at the bottom was flooded out. Too late to stop so I piled through the water like a blunt snow plow! Coming out the other side suddenly the exhaust noise was MUCH louder than before. As so it went until we parked it to become a storage unit for 12 years.
- This couple that bought it assured me it would be a simple thing for AAA to tow it to a repair facility. "Uh, what about the 15 year old tires, expired plates and it's not an emergency tow", I asked? "No problem with a big tip and plates from a Honda" was the answer. Ouch! My answer was once it is on the street in your name, not my problem.
- Several AAA scheduling attempts later it is Thursday afternoon and we need to be leaving for Winters in our camper to help with course marking and hall setup Friday morning. They said the tow truck is coming(!) so I pulled the MH out onto the street ready to be picked up and dragged away, and we left (at 6pm instead of 1pm). 
- During the next two days I got several depressed texts reporting on their non-progress and when we returned Saturday PM it stayed until about 6pm that evening when finally it left my life forever.
- A couple of neighbors were not happy but another 8 I polled didn't think it was a problem and suggested I "consider the source". I like those neighbors! :-)

So we arrived at the Lake Solano Campground and Susan asked, "which campsite?" and when I replied "upper number 40" she replied, "TURKEYS!", which brought to mind when I made the reservations we thought Susan would not be coming because her dad was sick and needed her. Oops. Turkeys are active and noisy well into the night. Susan is a very light sleeper. It's only 2 nights?

The next morning luckily we were able to sleep in and still rendezvous at 10:30 with the FARA team where we got the 1.5 mile walk and 13 mile course. Paul's second tactical error (after the turkeys) was to suggest walking the 1.5 mile walk placing signs and ground arrows along the way instead of using the truck. We don't walk much, Susan has a bit of a bad knee and I had sprung my knee a tad a few days ago falling part way out of the MH driver's door. 1.5 miles is not a long way but we were feeling it by the end. Then we drove out to the 13 mile course halfway point rest stop putting signs and arrows as appropriate along the way.

Then the team met for lunch and at 2pm tore into the hall setup finishing by 3:30pm. By the 7th or 8th year in the same venue you know where everything goes and it's quick.

That evening we had a potluck BBQ and were back at camp by 9pm (camp gates close at 9pm). 

Saturday at 7:30am found us mingling with all the special people that make up the FAmily. FA'ers, parents, sibs, relatives, friends, volunteers and professional like Dr. Gino Cortopassi from UC Davis who is working on Nrf2 channels in FA. 

J.D. to the left and I to the right of the big fellow
By 8:30am I'm as ready as I was going to be and feeling the least prepared in any of the rides. I told my ride partner for the morning J.D. Abouchar, dad in a recently diagnosed family, that as we approached the 13 mile halfway rest stop I would decide whether to wimp out and return, or decide I could repeat that stretch 3 more times. I did decide to continue and barely made it to the 23 mile halfway rest stop. Whew it felt good to dismount! 

of It's like old home week at the rest stop, the same wonderful volunteers have served here for most the years in this Winters' venue. My special sweetheart niece Ashley wanted to know WHY I haven't been talking to her for ages (I asked if her phone could still do outgoing calls. :-) ). I'll be upping my game to keep in touch with her. My B-I-L Richard appeared at my side with his biking and entertainment partner Bhavani explaining they had come up from SF too late to do the 52 mile course so they were lazing through the 23 mile course. LAZING THROUGH?! I changed the subject. lol The bustle and noise of the crowd was warm and friendly. 

J.D. and I continued on after 20 minutes or so and shortly caught up to triker Sean Baumstark, one of the four 2010 FARA RAAM riders (We had 3 of the 4 riding this year; Kyle, Sean and John, missing only Mike). J.D. and Sean hit it off immediately both being avid bikers. After a bit my body started telling me enough already, REST(!) so I told my two companions to keep on while I inspected the grove next to us. After a 10 minute break I continued on for a time and then had to give it up again for 10 minutes. Right after that I rejoined the main road back to the finish which was mostly a gentle downgrade so I was able to finish at a reasonable clip. At the finish I had to stand straddling the bike for 2 or 3 minutes waiting for my body to get used to this new unstressed position. I've never had to stop once let alone twice on this course and my body was telling me loud and clear something better change by next year. I think I'll listen. :-)

The Outback lunch and pie dessert was great as was Kyle's talk. He reported $81K in research donations - that's great!

Reata, a drug company with a drug in their phase III clinical trial reported their trial will be over around September and by the end of the year they will be able to state if they think their results with pass muster with the FDA. It will take most of 2020 to move the petition of approval through the FDA. I am hopeful one of the 5+ gene therapy companies will move one of their products into Phase I by the end of the year. Take a peek at our research status at http://www.curefa.org/pipeline .

The temperature was closing in on 88 by then so Susan and I went back to the chilly air conditioned trailer for a couple of hours before breaking camp and heading back home and my shift with Brianne at 10pm.

Today we are at $86K which makes the point that if you haven't financially supported me yet and would like to the fundraiser is still going. :-) Go to 
https://secure2.convio.net/fara/site/TR/Events/General?px=1001704&pg=personal&fr_id=1541 
or mail me a check made out to "FARA" to 1921 Alice Dr., Penngrove, CA 94951. 

That's it for another year! Thanks for reading along. Stay safe, stay healthy and remember this day will never reoccur in eternity. How did you spend it? :-)

Paul, Dad to Brianne, FA, 41

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