We did it - again! Right off and first thing I want to thank all of the Team Blue Skies sponsors that caused Brianne and I to meet our goal and the team to exceed the $4,000 goal! The team total is $4770!! We were even in 4th place until the day of the ride, a first time experience!

Your money as part of the Ride Ataxia NorCal total of $111,000 will fund at least 3 research grants like the gene therapy experiments that are exciting us all! Your money DOES make a difference in how long children will have to suffer this disorder! Thank you again!

(And yes you can still donate to FA research  and our team! Go here, 

http://rideataxia.kintera.org/faf/search/searchTeamPart.asp?ievent=1099129&lis=1&kntae1099129=1309F4E92ADA4795A4497A392DB6D38C&supId=0&team=5857715&cj=Y

and click on one of our names or on "Donate Now" for the team.)

The weather was GREAT! Cool but not cold in the morning, AND NO WIND!! WhooHoo! And a good thing because our ride north (prevailing wind is south-bound) last year was 1.2 miles and this year it was 2.2 miles. Two years ago in the 22mph headwind I pedaled for 20 minutes at 3.8mph for that 1.2 miles; had we had the same wind this year it would have been a 35 minute pedal! But it wasn't! :-) I am sure we rode the course at a much higher average speed than the last couple of years but my speedometer was left at home so I'll guess close to 10mph average.

There were almost 400 riders this year; great company and in good spirits. FA'er Izzy Penston jumped a bike and rode with her dad - You Go Izzy! See the article http://www.mercurynews.com/ci_25853361/alameda-family-riding-save-lives-raise-awareness-rare  . Sophia Sieber came out with her 1 year old son to ride the second (Phillip Bennett) wheelchair trailer; more on that below.

Several families filled out info questionnaires for other newspaper articles and I'll share them if they happened.


Pictures of the ride will shortly be posted on my FB page. Here we are starting the 17 mile Ride.













Sophia and her BF crashed the Phillip Bennett wheelchair trailer while riding a fifth lap on the 1 mile course. You really have to be trying to tip one over! I'm sure he got over-confident and was going too fast into a short downhill ramp that ends in a 90 degree left turn immediately into an uphill ramp. Probably wanted more momentum so he wouldn't have to pedal as hard uphill. He did get momentum; too fast in the downhill, swung wide in the turn and side-swiped the curb at the start of the uphill and Newton's Laws of Motion took over - WHOMP! See Sophia's "badge of courage". BF gets no badge and I'm sure he's still in the doghouse with all the Sieber family (not to mention me).

As an aside The Ride Saturday followed a touching dedication last Wednesday for our fallen FA friend Phillip Bennett at his HS in Fremont CA. The student  leadership team decided to plant a tree in his honor because of the inspiration he brought to his classmates and to start a tradition of opportunity for students to write on plastic flowers what they hoped to accomplish in their lives. Phillip had taken to heart Gandolf's admonition in the book "Fellowship of the Rings", "All we have to decide is what to do with the time that is given to us.", even to have it tattooed on his arm in the Elvish language. So Wednesday a group of us helped the leadership team communicate Phillip specialness and inspiration to the student body in 6 presentations through the school day. A special day for his family and for us, his friends.

So in Phillip's and Gandolf's spirit we will continue to ride and to move money into FARA's efforts to bring FA's history to an end as soon as possible, and as effectively as was done for polio! Amen! (def: So be it). Y'all enjoy the day and perhaps think about what to do with the days remaining that have been given to YOU.

Regards,

Can't help it; gotta blog you! 1:15pm, got back from my bike ride ten minutes ago. Shower soon. Hydrating drink next to me (can of 7up, lots of ice and enough bourbon for taste. yum).

80 degrees out there with a cool-ish breeze. Country station in my ear bud, rolling easy! Stats: 1h-11.4m, 18.420mi (yes it measures distance to 3 decimal places!) gives an average of 15.5mph. I'm ready! Of course we'll be lucky to do half that at Davis with the headwind but there's hope my body will hold together one more time! lol My max was 25.5mph; a long slight downhill that by a constant leaning into the pedals allowed the speed to build up. Much faster than that makes me nervous; after all I'm on a bicycle built in the late '70s/early '80s (Schwinn road bike!), all original, so the idea of going 30mph without a safety body suit just isn't appetizing!

Back a ways I got a free digital blood pressure/pulse dealie-bob so 10 minutes after I stopped my blood pressure was 120/87 and pulse 85; better than that pesky 130 last time. Don't think I'll mention this to my Kaiser doc though; hate to have him worrying.

OK! Shower, order pizza for in-laws coming to dinner, then string wire in bee frames for the balance of the afternoon (7:30am - 11am got me reasonably caught up on my FA Emails) until time to pick up the pizzas and share a bottle of my neighbor's red wine with family!

Tomorrow when I look back at today I think I will feel I did not waste this day in my life that will never present itself again. My wish for all of you that you may say the same tomorrow. God bless.

10 more days! And boy am I ready (HaHaHa)! As soon as I finish this blog I'm doing another 18+ mile ride and maybe I'll get one more ride in before next week. I plan to not ride next week to give my muscles time to heal/rest/go-flat; around-the-house projects will fill in for exercise.

We will have 2 wheelchair trailers in the Ride this year; the pair Brianne and Sophia once again! These two are troopers. Don't underestimate the strain and fatigue sitting in a wheelchair on a kid's stripped-down bike trailer; the wind gusts tugging, the constant wiggle-wagging side to side of the tower's pedaling cadence shifting the bike frame back and forth, the occasional oops! we dropped a wheel off he asphalt (Sorry!) and of course the tension waiting for the next surprising WHOOSH! of the car or truck blowing by from the rear with little to no warning (roar of the wind, poor hearing and no rear view mirror). These ladies will sleep well Saturday night after 2 1/2 hours paying the piper to raise money for their cure!

Thanks to a number of WONDERFUL friends, relatives and world-wide FAmily I have exceeded my personal fundraising goal! WhooHoo! And the Team Blue Skies goal of $4,000 (recently lowered from the too-stretched goal of $6,000)  is over 75%! For anyone just joining us on this blog or for those "waiting  to see" you certainly are welcome to add to my fundraising total or you could consider sponsoring Brianne who is near her goal, Brianne's Uncle Richard who doesn't have much of a network to go to, or Sophia and Claudia who have joined the team recently and are starting to move up in sponsorship amounts! Go to the Team Blue Skies page here
  http://rideataxia.kintera.org/faf/search/searchTeamPart.asp?ievent=1099129&lis=1&kntae1099129=32C16EAAE6DB48B9AB353087CD1261E7&supId=0&team=5857715&cj=Y
for more detail. You can also just donate to the general team.

This morning I saw an article of stem cells in MS mice which makes me suspect significant FA stem cell research can't be far away! What research momentum we have going!
http://www.curefa.org/pipeline.html

Well the day is heating up and I need to get-a-movin'!

It's a nice day. 90 degrees. I went riding. I got hot. I am tired. I have mini muscle cramps tweaking around my body as I sit here. It was fun (I must like abuse).

My riding buddy Dave left today for a long trailer vacation (good for them!) so now I'll be riding alone unless my bro-in-law Richard and I can synch our schedules (unlikely), and of course his idea of a ride is 40 - 50 miles and mine is 20. Mmm. I think me and the bike radio will be ride buddies until the 31st.

The last two days it was 95-ish and before that the winds were high so my 2x rides a week has not been workin' out as planned. And no, I did not drag 3 sacks of sand behind me today. :-) And a good thing; I'd never have made it (or would have been completely frazzle-frazzle-frazzled).

I did OK today: 18.9mi, 14.7mph average, 24.7mph max (no real hills so I don't know how I managed that) and it took me 1h 17m of actual riding time. During the ride I stopped at the hardware store for 30 lag bolts to make Susan another raised vegetable garden bed (carried them in a backpack the rest of the ride; does that count for sand??), stopped at my favorite insurance agent's office, State Farm's Tony Maestri, to re-fill my water bottle, be social, and fill the office with the fragrance of sweaty bike rider, then lastly stopped at Brianne's just to harass her for a few minutes. 10 minutes after finishing the ride my blood pressure was 130/82 and pulse was 86; I like the 82 and 86 but I'm not sure what to make of the 130. Probably has something to do with my bright red cheeks. lol

Y'all think about sponsoring me (or Brianne or Richard) if you haven't and if you have I am so thankful for your generosity! I am at $1850 and Brianne is at $750 (Richard needs some help). I think it is shower time now and an evening of Brianne quality time starting at 6pm. See ya!

A couple of days later now and I finally let my friends and relatives know about the coming ride (Brianne had done so weeks ago) so our Team Blue Skies fundraising page

 http://rideataxia.kintera.org/faf/search/searchTeamPart.asp?ievent=1099129&lis=1&kntae1099129=28A75B9103784DB3BD74935B90D63199&supId=0&team=5857715&cj=Y

has taken a wonderful jump to $1,620! We have set a stretch goal of $6,000 this year to emphasize the need and opportunity to help push FA research forward through these clinical trials. The overall RA NorCal goal is $125,000 and is making good progress at $48,300 this morning! Thank you all that have donated so far! More will follow I am sure!

For the next couple of weeks I will be riding twice a week towing the trailer and carrying 100lbs of sand to simulate Brianne. Oh joy! :-)

Another week is gone or another is beginning depending on how you view your week! In any case I'm now within a month of Ride Ataxia NorCal and I'm trying to step up my game a bit with 2 gambits. For the next 3 weeks I will be trying to be on the road for at least 20 miles twice a week, then the last week before The Ride I'll give the legs a rest. The other gambit will be to ease off the food and treats maybe with a little treadmill/toning exercise. If I can drop 5+ pounds it will make a difference in the ride. My last solo ride I averaged a tad above 14.5mph, mostly flat riding and not too much wind but good for me nevertheless. :-)

As always I appreciate the support of my friends and family! Each year FA research moves forward and so does the need for "push" money to advance us further into these translational and trial phases of research. Some of the most exciting and promising research are in the middle of translational phases and Phase I and II clinical trials. See http://www.curefa.org/pipeline.html  On May 1 a study was published giving the first proof in FA'ers that Frataxin can indeed be increased to my asymptomatic carrier levels. Much more research is needed and is in progress! WhooHoo!

We are at $40,189 right now! Sponsor one of the Team Blue Skies riders at
http://rideataxia.kintera.org/faf/search/searchTeamPart.asp?ievent=1099129&lis=1&kntae1099129=BD93EAB14F9A42FF813266936F29A4B7&supId=0&team=5857715&cj=Y

Obviously I am not a great blogger because the 2013 Ride Ataxia NorCal experience came and went without a mention here. Truth be known I got distracted and forgot all about this communication link. This pic taken by my lovely Susan captures the essence of the day. We had just turned the corner directly into the 20+mph wind and had a mile to go to the halfway point rest stop. It is now my Facebook profile picture and will remain so until after this year's Ride.

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!