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. :-)
Monday, April 25, 2016
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!
Here we are in later April 2016, about 6 weeks from this year's Ride Ataxia NorCal and yes, I have actually been preparing for the ride with Brianne! :-) Her broken leg has long since healed so we are looking forward to pedaling for a FA cure!
This year I have taken a different approach to my preparation: weight loss! On Valentine's Day I weighed myself, 200.3lbs! My dad bless his heart was a pretty big fella (cross country truck driver for many years) and I have always sworn I would not go over 200lbs. Well, there I was. So I cut out ice cream, second helpings, bread and alcohol. This morning I am down to 184.4lbs! 15.9lbs less to lug around the course! And I have been riding about once a week plus cutting, loading and stacking some cords of firewood. I should be ready for this year's wind and Brianne's rig's weight! I feel like Rocky in Russia! lol
FA research moves in fits and spurts it seems.
- Some of the most hopeful drug strategies have been stuck in the lab for the last year, notably HDACi (to "wake up" the bad genes), gene therapy (to put good new genes in) and TAT-Frataxin (to carry supplies of the lacking protein Frataxin into the mitochondria). These are all incredibly complicated lines of research and are spending the needed time in translational studies to give the best assurance of safety and efficacy before being tried out on people.
- But at the same time some newcomers drug companies have ripped in with new possibilities, and possibilities that can go right into trials! RTA-408 and R001 are two examples.
Take a look at the FARA Research Pipeline graph and the individual reports below that! http://www.curefa.org/pipeline
Brianne is doing OK. She has avoided the flu and generally has been healthy. She continues to control her weight, a good thing for her and her caregivers when away from the house's ceiling track system. Right now she is focused on re-planting for this summer season outside the door of her apartment.
I would love to see some of you at Davis for this special day! Come on Friday and I'll get you into our pre-party at the USA bike museum in Davis! If you would like to help there are always jobs to do! Let me know!
My fundraising Ride Ataxia NorCal page is at
http://fara.convio.net/site/TR/Events/General?px=1001704&pg=personal&fr_id=1261
Prayers for research success, good thoughts about us making the course "one-more-time" and a donation if you are so minded are all gratefully accepted! Any problems Email me at pkonanz@comcast.net.
I'll try for another blog just before the gala affair! Susan and I will be camping West of Winters Thursday through Sunday (or Monday!) so my blog will be early in the week.
This year I have taken a different approach to my preparation: weight loss! On Valentine's Day I weighed myself, 200.3lbs! My dad bless his heart was a pretty big fella (cross country truck driver for many years) and I have always sworn I would not go over 200lbs. Well, there I was. So I cut out ice cream, second helpings, bread and alcohol. This morning I am down to 184.4lbs! 15.9lbs less to lug around the course! And I have been riding about once a week plus cutting, loading and stacking some cords of firewood. I should be ready for this year's wind and Brianne's rig's weight! I feel like Rocky in Russia! lol
FA research moves in fits and spurts it seems.
- Some of the most hopeful drug strategies have been stuck in the lab for the last year, notably HDACi (to "wake up" the bad genes), gene therapy (to put good new genes in) and TAT-Frataxin (to carry supplies of the lacking protein Frataxin into the mitochondria). These are all incredibly complicated lines of research and are spending the needed time in translational studies to give the best assurance of safety and efficacy before being tried out on people.
- But at the same time some newcomers drug companies have ripped in with new possibilities, and possibilities that can go right into trials! RTA-408 and R001 are two examples.
Take a look at the FARA Research Pipeline graph and the individual reports below that! http://www.curefa.org/pipeline
Brianne is doing OK. She has avoided the flu and generally has been healthy. She continues to control her weight, a good thing for her and her caregivers when away from the house's ceiling track system. Right now she is focused on re-planting for this summer season outside the door of her apartment.
I would love to see some of you at Davis for this special day! Come on Friday and I'll get you into our pre-party at the USA bike museum in Davis! If you would like to help there are always jobs to do! Let me know!
My fundraising Ride Ataxia NorCal page is at
http://fara.convio.net/site/TR/Events/General?px=1001704&pg=personal&fr_id=1261
Prayers for research success, good thoughts about us making the course "one-more-time" and a donation if you are so minded are all gratefully accepted! Any problems Email me at pkonanz@comcast.net.
I'll try for another blog just before the gala affair! Susan and I will be camping West of Winters Thursday through Sunday (or Monday!) so my blog will be early in the week.
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