Friday, February 26, 2010
Front Page
Check out this article from the Grass Valley Union that made the front page this week: Crusade for a Cure
Friday, February 19, 2010
Ultra FARAthon!
Hey folks,
I came across this story the other day about a woman who is going to run a 7 day Ultra Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website:
"By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world.
Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do.
I came across this story the other day about a woman who is going to run a 7 day Ultra Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website:
"By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world.
Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do.
The main thing, though, is that I am doing it for a wonderful and most worthy cause, which I do hope you will support. Friedreich's Ataxia (FA) is a cruel disease of which there is no known cure. It is a debilitating, life-shortening, degenerative, neuro-muscular disorder.
I have watched its cruel and relentless progress affect the health of the daughter of my very good friends in Hong Kong, Angelo and Monica Pepe. Angelo worked tirelessly raising funds for research into the disease, and spent lots of his own money too. Sadly, Angelo succumbed to cancer at the end of 2008, and, before he died, I promised myself that I would try and help towards his work, and raise money for research in the hope that a cure can be found.
The charities for which I will be raising money are Ataxia UK and Friedreich's Ataxia Research Alliance (FARA). FARA is a non-profit, tax-exempt organisation dedicated to curing FA through research, pharmaceutical/biotech drug development, clinical trials and scientific conferences."
View marilena's website HERE.
Monday, February 15, 2010
Two New Rides!
FARA Presents
Ride Ataxia Tampa Bay
and
Ride Ataxia NorCal!
Hello Cycling Enthusiasts!
FARA has two new reasons to look forward to the spring cycling season!
The FARA staff has been hard at work for the past several months in order to bring you two challenging and family fun cycling events in the spring! So it is time to tune up that bike that's been in the garage all winter and start riding because registration is now open for Ride Ataxia NorCal and Ride Ataxia Tampa Bay!
Ride Ataxia Tapma Bay
In partnership with the Outback Steakhouse Golf Tournament, Ride Ataxia Tampa bay will take place on Tuesday April 13 along the Suncoast Trail in sunny Tampa Bay, Florida. The ride will feature something for everyone with 10, 25, and 50 mile routes. The Suncoast Trail provides a safe, inviting, scenic atmosphere for a family ride. All three routes have a relatively flat elevation profile which will allow participation from all ability levels.
FARA will be one of the benefiting charities at this year's Outback Steakhouse Pro-Am Golf Tournament andRide Ataxia is one of a handful of events leading up to the tournament. Registration for the ride includes entrance into the Golf tournament on the weekend following the ride.
To find out more details, register for the ride, and make a donation please visit our event site at http://rideataxia.org/tampabay.
Ride Ataxia Nor Cal
On May 15 and 16, 2010, participants will ride 100 miles in 2 days along the scenic Foothills of Northern California from Folsom, CA to Grass Valley, CA and back. The ride will also include 10- and 25-mile routes allowing participants of all abilities. FARA expects over 400 participants ranging from beginners to expert cyclists, families, FA patients, and dedicated supporters.
Locally the event falls on the same weekend as the start of the Amgen Tour of California; one of the country’s most popular professional bicycle races which will bring Lance Armstrong and Levi Leipheimer as well as many other pros to the area. Ride Ataxia will provide the opportunity to ride some of the same roads as the Amgen Tour of California the day before the pros race through.
To date, Ride Ataxia has helped bring together $830,000 for FA research and will pass the million dollar mark with the efforts from each participant during the Nor Cal ride. The goal for this event is to raise a total of $170,000.
To find out more details, register for the ride, and make a donation please visit the event website at http://rideataxia.org/norcal.
FARA has Ride Ataxia events planned for Philadelphia and Southern California in the Fall of 2010!
Friday, February 12, 2010
Neurology Now!
Friedreich's Ataxia was featured in a major medical journal this month, Neurology Now! When they mention Repligen Corporation they are talking about work that was funded by a Ride Ataxia Grant! We are truly making an impact!
A piece of the article-
"There is promising news on the horizon for people with Friedreich’s ataxia, a neurological disease that causes progressive muscle weakness, difficulty walking, slurred speech, and heart problems. The discovery of the mechanism for a potential drug treatment was reported in the September 25, 2009 issue of the medical journal Chemistry & Biology.
A team of researchers led by Joel Gottesfeld, Ph.D., professor of molecular biology at the Scripps Research Institute in LaJolla, CA, discovered the specific enzyme target of a compound called 4b that stops the progression of the disease in mice. Dr. Gottesfeld’s team discovered the compound three years ago but didn’t
know how it worked. Now, having identified the particular enzyme that 4b blocks, they are developing targets for treatment."
Read the entire article here: http://curefa.org/_pdf/NeurologyNowJan2010.pdf
The Picture-
Note: This picture was taken by Rick Guidotti representing his organization Positive Exposure. Through an unfortunate mix up the credit was given to my friend Blake Andrews at SLOTography. Sorry Rick, this one worked out in Blake's favor!
A piece of the article-
"There is promising news on the horizon for people with Friedreich’s ataxia, a neurological disease that causes progressive muscle weakness, difficulty walking, slurred speech, and heart problems. The discovery of the mechanism for a potential drug treatment was reported in the September 25, 2009 issue of the medical journal Chemistry & Biology.
A team of researchers led by Joel Gottesfeld, Ph.D., professor of molecular biology at the Scripps Research Institute in LaJolla, CA, discovered the specific enzyme target of a compound called 4b that stops the progression of the disease in mice. Dr. Gottesfeld’s team discovered the compound three years ago but didn’t
know how it worked. Now, having identified the particular enzyme that 4b blocks, they are developing targets for treatment."
Read the entire article here: http://curefa.org/_pdf/NeurologyNowJan2010.pdf
The Picture-
Note: This picture was taken by Rick Guidotti representing his organization Positive Exposure. Through an unfortunate mix up the credit was given to my friend Blake Andrews at SLOTography. Sorry Rick, this one worked out in Blake's favor!
Thursday, February 4, 2010
The Art of Cycling In The Rain
My friend Blair at The Sacramento Bee just published an article about winter cycling. Blair and I often pass each other on the bike trail so he called me up to get some comments about riding in Sacramento in the winter. Below are a couple tidbits from my input into the story. To read the full article click here.
"We have an absolutely beautiful trail out there," says Kyle Bryant, who has the inherited disease Friedreich's ataxia, which weakens muscles, vision and hearing, and is life-threatening. He rides a three-wheel recumbent bike to help him with balance and is a regular presence on the American River bike trail.
"I just like getting outside. It's painful to be cooped up. You feel like your muscles are going stale all day," he says. "It's tough for the first 15 minutes getting warmed up, but at the end, you feel like you're ready to conquer the world."
...
Bryant says waiting too late to achieve springtime fitness can lead to injuries.
"You need to start riding now. I developed knee problems in the past that resulted from riding too hard in a short amount of time," he says. "I had those problems when I was a total beginner cyclist."
Saturday, January 23, 2010
Keith Michael Andrus: 12/21/1985 - 1/22/2010
Dear Friends,
We, at the Friedreich's Ataxia Research Alliance (FARA), are deeply saddened to inform you of the passing of Keith Andrus on January 22, 2010. Keith was the beloved son of FARA President Ron Bartek and his wife Raychel. Keith's diagnosis of Friedreich's ataxia inspired Raychel and Ron to pick up that torch, joining him in his fight, and found FARA. Even during the final and very challenging months of Keith's life he courageously continued to not only advocate for himself but for others with FA as he left no stone unturned exploring advanced and experimental treatment options. Keith also made the decision to make the ultimate contribution to research at the end of his life with the donation of his tissues so that research will continue. Because of Keith many thousands have hope for a treatment for FA. Thank you, Keith.
We often quote Ron as saying, "Acting alone there is little any of us can accomplish whereas acting together there is little we will not accomplish." These words are deeply rooted in the FARA culture- the way we pursue treatments and a cure for FA, and today they also serve as a source of comfort in this time of great sadness. While our hearts break for the Andrus/ Bartek Family, we feel the collective strength of our greater FA family. You stand beside us in our work every day. You hold us up. You push us forward. In this time of grief, you are present and our commitment to and sense of urgency for the FARA mission does not waiver.
If you wish to extend personal condolences to the Barteks, you can do so by mail at: 4505 Wakefield Drive, Annandale, VA 22003 A memorial service will be held on Saturday January 30, 2010 at 11am at St. Matthew's Methodist Church, 8617 Little River Turnpike; Annandale, VA 22003-3604. At Keith's request, FARA has established a memorial fund, designated to cardiac research in FA, for contributions made in Keith's memory.
We are grateful to Ron, Raychel and Keith for making their journey with FA into a greater alliance of families and for the FA research progress born out of that alliance.
Sincerely,
The FARA Board of Directors & Staff
We, at the Friedreich's Ataxia Research Alliance (FARA), are deeply saddened to inform you of the passing of Keith Andrus on January 22, 2010. Keith was the beloved son of FARA President Ron Bartek and his wife Raychel. Keith's diagnosis of Friedreich's ataxia inspired Raychel and Ron to pick up that torch, joining him in his fight, and found FARA. Even during the final and very challenging months of Keith's life he courageously continued to not only advocate for himself but for others with FA as he left no stone unturned exploring advanced and experimental treatment options. Keith also made the decision to make the ultimate contribution to research at the end of his life with the donation of his tissues so that research will continue. Because of Keith many thousands have hope for a treatment for FA. Thank you, Keith.
We often quote Ron as saying, "Acting alone there is little any of us can accomplish whereas acting together there is little we will not accomplish." These words are deeply rooted in the FARA culture- the way we pursue treatments and a cure for FA, and today they also serve as a source of comfort in this time of great sadness. While our hearts break for the Andrus/ Bartek Family, we feel the collective strength of our greater FA family. You stand beside us in our work every day. You hold us up. You push us forward. In this time of grief, you are present and our commitment to and sense of urgency for the FARA mission does not waiver.
If you wish to extend personal condolences to the Barteks, you can do so by mail at: 4505 Wakefield Drive, Annandale, VA 22003 A memorial service will be held on Saturday January 30, 2010 at 11am at St. Matthew's Methodist Church, 8617 Little River Turnpike; Annandale, VA 22003-3604. At Keith's request, FARA has established a memorial fund, designated to cardiac research in FA, for contributions made in Keith's memory.
We are grateful to Ron, Raychel and Keith for making their journey with FA into a greater alliance of families and for the FA research progress born out of that alliance.
Sincerely,
The FARA Board of Directors & Staff
Friday, January 22, 2010
FA Cardiac Study
On my way home from Philadelphia earlier this week I stopped by Ohio State University in Columbus Ohio to participate in the Cardiac Study with Principal Investigator Dr. Subha Raman. This study uses a cardiac MRI to take very accurate pictures of the heart. The purpose of the study is to develop a protocol for detecting common signs of cardiomyopathy (the condition that shortens the life of an FA patient) in FA. Little is known about cardiomyopathy in FA because there has not been an accurate way to track it...until now. With this new technique, cardiomyopathy can be detected in early stages and can be treated with common, established treatments.
This study was one of two ($120,000 each) funded by the proceeds from Ride Ataxia II.
I showed up to the Medical Center and was greeted by the smiling face of Beth McCarthy (Dr. Raman's research coordinator). I got checcccked in and we headed back to the prep room. There was a team of four other nurses in the room to wait on me and make me feel comfortable. The first thing was to get into some more comfortable ccclothes so they gave me a robe and some pajama bottoms to change into. Once I was changed, they told me to laaaay back and they got started. First, one of the nurses shaved three patches out of my hairy chest so they could find skin to put some little sticky electrodes (maybe I should just shave it all off).
Then another nurse put two IV's in my right arm (she said I have nice veins and I called her a vampire, she gave me an affirmative shrug). Ine of the IV's was for the injection of a drug that causes the blood vessels to expand temporarily so they can see the vessels more clearly. The other IV was for a "contrast agent" which helps the MRI machine see the blood vessels in contrast to all the other stuff on the inside.
After I was all poked, prodded, and prepped I got in a wheelchair and they transported me over to the room with the MRI machine. As we waited for our turn to use the machine Dr. Raman sat down with me to chat about the study. One of the things that stuck out to me was that this technique is very accurate and the results are easily reproduceable. Often times in a research study the results have a lot of variability so it takes a large number of participants to produce statistically significant results. The MRI technique used for this study is produces dependable results that not variable and can be reproduced easily.
When the machine became available, we rolled in to meet another two technicians that were there to monitor the process. I transferred to the little sliding bed which would carry me into the machine and they got me all hooked up to wires and IV's again..bmp)
The scan would take 45 minutes but I wore headphones for communication with the technician and the headphones played music so I didn't have to listen to the loud, strange noises coming from the huge machine that surrounded me. About 20 minutes in to the process, the technician informed me that they were going to inject the drug that would enlarge my veins, she told me that my heart rate would go up, my chest might get a little tight and my breath might get short. The injection went in and I felt all the symptoms but they were not half as bad as they were hyped up to be. That was the most uncomfortable part of the process...piece of cake!
They removed me from the MRI machine at 11:55 and I was supposed to be speaking at noon. So we rushed back to the prep room where I was hooked up for one last EKG before I quickly changed and headed out to address the members of Dr. Raman's team. During my talk to the group I let them know that we (the FA community) are their biggest fans and we aare in awe of their brilliant and capable minds. I let them know that the funds for their research came from a patient driven fundraiser which makes it all a little more meaningful. I let them know that they awre now part of a strong team that consists of patients, doctors, pharmaceutical companies, academic institutions etc. with the common goal to CURE FA.
Once again I felt empowered by participating in this study, especially knowing that this study operates from money raised during Ride Ataxia II.
Eventhough they pay each participant $100 (cha-ching), for me the main perk of participating in this study is that I have the best heart doctors in the country looking at my heart specifically for things that are caused by FA. There are lots of good cardiologists out there but OSU is the only place (so far) that offers such a close look at things that could potentially be wrong with a heart affected by FA.
To find out more about this study and to inquire about participation, please check out the recruitment notice.
This study was one of two ($120,000 each) funded by the proceeds from Ride Ataxia II.
I showed up to the Medical Center and was greeted by the smiling face of Beth McCarthy (Dr. Raman's research coordinator). I got checcccked in and we headed back to the prep room. There was a team of four other nurses in the room to wait on me and make me feel comfortable. The first thing was to get into some more comfortable ccclothes so they gave me a robe and some pajama bottoms to change into. Once I was changed, they told me to laaaay back and they got started. First, one of the nurses shaved three patches out of my hairy chest so they could find skin to put some little sticky electrodes (maybe I should just shave it all off).
Then another nurse put two IV's in my right arm (she said I have nice veins and I called her a vampire, she gave me an affirmative shrug). Ine of the IV's was for the injection of a drug that causes the blood vessels to expand temporarily so they can see the vessels more clearly. The other IV was for a "contrast agent" which helps the MRI machine see the blood vessels in contrast to all the other stuff on the inside.
After I was all poked, prodded, and prepped I got in a wheelchair and they transported me over to the room with the MRI machine. As we waited for our turn to use the machine Dr. Raman sat down with me to chat about the study. One of the things that stuck out to me was that this technique is very accurate and the results are easily reproduceable. Often times in a research study the results have a lot of variability so it takes a large number of participants to produce statistically significant results. The MRI technique used for this study is produces dependable results that not variable and can be reproduced easily.
When the machine became available, we rolled in to meet another two technicians that were there to monitor the process. I transferred to the little sliding bed which would carry me into the machine and they got me all hooked up to wires and IV's again.
.bmp)
The scan would take 45 minutes but I wore headphones for communication with the technician and the headphones played music so I didn't have to listen to the loud, strange noises coming from the huge machine that surrounded me. About 20 minutes in to the process, the technician informed me that they were going to inject the drug that would enlarge my veins, she told me that my heart rate would go up, my chest might get a little tight and my breath might get short. The injection went in and I felt all the symptoms but they were not half as bad as they were hyped up to be. That was the most uncomfortable part of the process...piece of cake!
They removed me from the MRI machine at 11:55 and I was supposed to be speaking at noon. So we rushed back to the prep room where I was hooked up for one last EKG before I quickly changed and headed out to address the members of Dr. Raman's team. During my talk to the group I let them know that we (the FA community) are their biggest fans and we aare in awe of their brilliant and capable minds. I let them know that the funds for their research came from a patient driven fundraiser which makes it all a little more meaningful. I let them know that they awre now part of a strong team that consists of patients, doctors, pharmaceutical companies, academic institutions etc. with the common goal to CURE FA.
Once again I felt empowered by participating in this study, especially knowing that this study operates from money raised during Ride Ataxia II.
Eventhough they pay each participant $100 (cha-ching), for me the main perk of participating in this study is that I have the best heart doctors in the country looking at my heart specifically for things that are caused by FA. There are lots of good cardiologists out there but OSU is the only place (so far) that offers such a close look at things that could potentially be wrong with a heart affected by FA.
To find out more about this study and to inquire about participation, please check out the recruitment notice.
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