Blake and Dan

Two dedicated Ride Ataxia teammates share their thoughts...

Progression: A balancing act.

FA is a progressive disease which means it gets worse over time. This makes things especially challenging because there is a constant balancing act between pushing oneself in order to maximize one's physical abilities and giving in to reason and comfort.

For example, I am in a transition period between walking and cruising in my wheelchair. Whenever I leave the house I have to assess the situation and decide whether or not things will be easier with the wheels. I have to consider the terrain I will be in, the time frame of whatever I am doing, the people that will be there, the activities that will take place, how I am feeling at the time etc.

After taking all these things into consideration I place them on either side of a scale. On one side of the scale are all the reasons why things might be easier with the wheels. On the other side of the scale is one thing: The fact that the more comfortable I get in the chair, the more time I will spend there.

to be continued...

FARA West

The FARA West Open House was yesterday and we had a huge turnout! We had 50-60 people in my 900 square foot house. We are all glad it was not raining because most of the people hung out outside where there was enough room.

The crowd consisted of our dedicated supporters from my home community, Lake Of The Pines. There was also a strong showing from the Krill clan, see you guys Wednesday night! And as always there was a strong showing from my aunts, uncles and cousins. Uncle Steve even showed up. He drove all the way down from Libby Montana and I had no idea he was going to be here until he walked up the driveway!

It is evident that FARA has huge support in the Sacramento area and the entire west coast so lets get to work and raise some funds for research!

Edison

I had an amazing experience at Edison Pharmaceuticals yesterday. Edison is focused on improving mitochondrial function and they have some amazing things on the horizon. I spent some time with their team and they seem extremely driven and focused, I had a great time.

Tomorrow is the open house for the new FARA office (my house) and should be a lot of fun. I'll let you know how it goes.

Philly Review

Wow, what an event! Last week was one of the most tiring and most rewarding weeks of my life!

Each night the preparations kept us busy until midnight and we started each day early so we could get a jump on all the issues. In the end the event was a huge success with 350 riders who helped to raise over $100,000 for research!

We raised about $55,000 online and the Northeast PA area Outback restaurants raised $41,000. We surpassed the $100,000 mark with the generous support of our sponsors such as Outback Steakhouse, Carrabba's Italian Grill, Bonefish Grill, Hank's Beverages, Allied Beverage, G&R Mechanical, F&F Mechanical, Faraco Knife and Slicer Co., Santhera Pharmaceuticals, Miller Coors, Heineken, and Dr. Holly Hedrick.

Ride Day started at 730am with registration where everybody was able to gather and meet before the ride started.



The 50 mile riders hit the course at about 845am and encountered a tough course. It was up and down all day, for me it was either 25mph downhill or 4-6 mph uphill. This was a consistent theme for all the ride lenghts (10mi, 25mi, 50mi) so we suffered through the symbolic up and down journey and the first riders came in at about 11am,








then the food started coming out! Outback, Carrabba's, and Bonefish cooked up Fish, Steaks, Mashed Potatoes, Greens...this stuff never tasted so good!

While the riders were out on the course there was a ton of activity back at the park. The kids enjoyed a bike loop around the park, crafts, moon bounce, face painting, and hay rides by horse drawn buggy.


I think this ride had a little something for everyone. The course was very challenging even for the experienced riders but there were shorter options which helped get everyone involved. The festival activities kept the kids busy allowing playtime for Mom and Dad. And the food was second to none!

In the end this ride had huge participation from many people who had never heard of FA before and we raised a huge amount of money. Awareness and fundraising are the key ingredients to finding a cure for this rare disease, we are on our way to a cure!

Feedback
"It was a great day, the ride was challenging, but rewarding, The food was amazing!!!!!! The hard work from all of the volunteers was amazing, the markings for the ride were phenomenal. I will definitely do this ride next year!!"
"It was a privilege riding in the Philly ride for such a great cause. Learned alot about FA and met some truly inspirational people. Hope to do it again next year."
"Food - great, who gets such a meal at a bike ride!?
Family events - kids had a great time and did not want to leave, bikes are still decorated
Course - hard but good that it was hard, somehow symbolic"

Find more pictures and reviews on the facebook FARA Fan Page.

Success in Philly!

Today was a huge success. We were hoping for 250 riders, we ended up with a total of 370 and when the final talley is made we will have more than $100,000 for research. We are one step closer to the goal!

More details and pictures to come.

Ride Eve

Tomorrow is the beginning of something huge. It is our first large scale ride with particiation from the general public. It is the first of many to come and we are off to a great start with 270 registered participants and we expect to be over 300 with day of registrants. This is huge for awareness and fundraising. We are confident that the cure is out there, it will just require money and time. Together we can make a huge dent in the money and then it's just a matter of time. I'll see you at the finish line!

Publicity

We shot a TV spot earlier this week and it aired today. PHL 17 did a great job and Dr. Lynch knocked it out of the park in his interview, we are all glad that he spoke slowly when answering the questions.
 
Our registration list is up to more than 250 riders. See you Sunday!

Three days left

Today we drove the route one last time to scope out the water stops one last time. Tonight we asssembled the route signs while we watched the Phillies win the National League Championship. Three more days of prep until game time for Ride Ataxia Philly!

This morning started with a visit to the FARA office in Exton, PA. Shortly after I arrived Juliann showed up to take the trek down to the channel 17 TV station. We met the guys at the station and then followed them out to a park that had a nice view of the Philly skyline. We shot a short interview and then some shots of me riding. They are going to interview Dr. David Lynch (Dave) tomorrow to get the scientific side of the story and then they will put it all together to paint the whole picture.

When we finished at the park, Juliann and I went to get some lunch downtown at Reading Terminal Market which was a huge warehouse of small shops selling fresh vegetables, meats, spices and all kinds of lunch food including these cupcakes to celebrate the Phillies' win last night.

After lunch we went to visit the Outback Steakhouse team who is going to help us in producing the event on Sunday. We spoke a bit and tried to convey to them how much their support means to us. This is truly going to be a first class event due in large part to the support provided by Outback!


Then we went out to dinner for FELICIA's (FARA program director) BIRTHDAY! HAPPY BIRTHDAY FELICIA!

Made It

I made it to Philly and my trike is in one piece and fully assembled, small victory! Just watched the Phillies beat the Dodgers! TV taping in the morning! I am posting from my iPhone and need to get to sleep but I hope to do a more detailed post within the next couple days.

Travel Prep

I am starting to see the light at the end of the preparation tunnel for the Philly Ride. It is down to the last minute stuff: I am about to apply the last coat of tape to the custom trike box, I just printed out my boarding pass and the last load of laundry is almost done, the packing is almost complete!

Next week is going to be nuts. I arrive in Philly at 9pm and I am staying at Jen Farmer's (FARA Executive Director) house. If I feel up to it I would like to try to assemble the trike that night because we need to have it with us for a taping for a TV show on Tuesday morning (details and airtimes will come in the next couple days). Tuesday evening Felicia (FARA Program Manager) and I are going to visit an Outback Steakhouse team who will be helping us with the ride and without them the ride would not go on. The next few days will be a firedrill of last minute details for the ride along with hanging out with Philly friends that I haven't seen for a while. Then THE RIDE is on Sunday! I am stoked that we have so many participants (around 200!) and I am crossing my fingers for good weather. The weather will be a small factor in the success of the ride. We will ride with purpose no matter what Mother Nature throws our way! See you there!

Linda

“So I go on, challenging myself in new ways that are more fulfilling than I think I would have if I didn’t have FA.”



Who am I? I am a 46-year-old woman, wife who is still infatuated with her husband, mother of two fun children, full-time employee at a very accommodating company, world traveler, book club member, dinner club member, church-goer, live in Central New York in a comfortable 100-year old house in the country with my family, dog, cat, rabbit, and chickens … and, oh yeah, I have Friedreich’s ataxia.

Life changed when I was diagnosed with FA at the age of 40 … just six years ago. That’s when I really started to appreciate the time we have. I have always been a bit “Carpe diem,” but there’s nothing like being diagnosed with a progressively debilitating disease to get you moving!

I took a new position at work that required/allowed me to travel internationally. On several occasions my family joined me in Europe during the summer break. The motive for traveling internationally was at first pragmatic … I should do it as soon as I can, before my symptoms make it too difficult. But it has proven to be such a positive experience for us all!

In the beginning of 2008, my husband Andy and I joined Kyle Bryant and others on Ride Ataxia II. It was certainly a life highlight that I would not have even thought of doing prior to FA! Not only did we all raise a lot of money for FA research, but it was so motivating to physically accomplish so much! We had never done anything like this before, and we were thrilled to be a part of it!

So I go on, challenging myself in new ways that are more fulfilling than I think I would have if I didn’t have FA. My mantra, quoted from Abraham Lincoln, is “And in the end, it’s not the years in your life that count. It’s the life in your years.” I encourage everyone with and without FA to live in this way!

Valuable Cardboard Box

Tonight we finished constructing the bike box and it just needs to be taped up after I stuff a few more things in there for padding.

First of all, earlier in the day I went out and bought a bunch of pipe insulation (foam padding) and some packing materials to pad the bike before we built the box around it. The picture below is a bit dark and blurry so let me describe it: A heap of bike parts with foam padding on all the sharp edges.


Then we folded the whole thing up in the two combined boxes. We used smaller (shoe) boxes to fill some of the voids between the bike and the outer box. We used a lot of tape but it is going to require a lot more! Here is our final product:


Overall I am pretty confident in our packing job but the safety of the trike all depends on how the luggage handlers treat it. If there are any luggage handlers out there reading this, please be gentile!

More Packing

Tonight we (Me and Andy) fully disassembled my trike and began constructing the box that it will fit into. It took us a couple hours and we put quite a bit of thought into the construction of the box before we made any cuts.

First we removed the front tires and the boom and folded down the handle bars. I realize it just looks like a heap of bike parts but we'd like to think there is a method to the heap:


Then we removed the rear wheel and rear derailleur. We boxed up the derailleur and taped it to the frame because we figured it is the most fragile piece:


Then we measured the whole thing a couple times before we made the cuts for construction of our oversized bike box. We are combining two bike boxes to make one large box:


So the outcome of the evening is the pieces of our box and a heap of bike parts. Tomorrow night we will put it all together.


One Concern:
Our finished product will be approximately 62"x27"x14" (103" length+width+height)and I'm not sure how it will fare within the Southwest Airlines baggage policy.

Here is the policy for bicycles:

"Non-motorized Bicycles, including Bike Friday and Co-Pilot, will be accepted in substitution of a free piece of checked baggage at no additional charge provided the bicycle is properly packaged and the box containing the bicycle fits within the 62-inch sizing limit and weighs 50 lbs or less . (Maximum weight is 50 pounds and maximum size is 62 inches (length + width + height) per checked piece of luggage). The handlebars, kickstand, and pedals must be removed and placed inside the box. A $50.00 each-way charge applies to bicycles that don’t meet the above criteria. Bicycles packaged in a cardboard box or soft-sided case will be transported as a conditionally accepted item."

The above makes it sound like everything's cool as long as I pay $50. However there is this:

"Weight and Size Allowance: Maximum weight is 50 pounds and maximum size is 62 inches (length + width + height) per checked piece of luggage. Effective June 17, 2009, overweight items from 51 to 100 pounds and oversized items in excess of 62 inches but not more than 80 inches (e.g.; surfboards, bicycles, vaulting poles) will be accepted for a charge of $50 per item."

The 80 inch max makes me a bit nervous...I'll give them a call tomorrow and I'll make sure to ask about my vaulting pole while I have them on the line.

Ride Ataxia Research Funds

Its payoff time! Now is when we can see the tangible impact of the Ride Ataxia efforts! Today FARA and NAF announced funding of the 4th, 5th and 6th Ride Ataxia research grants. Funding of these three grants brings us to 6 grants totaling over $700,000 in three short years. With this announcement we can clearly see the difference that is made with our combined efforts. This research will advance potential treatments toward clinical trials so that they will soon be available for patients like me and many of my teammates. This research provides hope to all who are searching for a cure and we are all a part of that hope with participation in Ride Ataxia either as a donor, rider or volunteer.

Press Release:
The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $120,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA). A third award will be funded by FARA for $120,000, made possible by sponsorship from Outback Steakhouse. One award is being made to Dr. Mark Payne of Indiana University School of Medicine, proposal titled “Optimizing delivery of frataxin using cell penetrant peptides”. The second award goes to Dr. Gino Cortopassi of the University of California Davis, proposal titled “Screening for mitofunctional Friedreich's Ataxia therapeutics”. The third will be granted to Dr. Marek Napierala from the University of Texas, MD Anderson Cancer Center, proposal titled “Crosstalk between microRNAs and iron metabolism in pathogenesis of Friedreich’s ataxia”. -->Read the entire press release.

Toastmasters

I started at my Toastmasters club about a year ago and it has been a huge boost in my confidence and public speaking skill level. I go once a week and I now serve as president of my club. I recommend it to anyone who is looking to improve their public speaking skills or to anyone who just wants to have a good time every week. If you are in Sacramento, come check out my club, Klassy Talkers, or find a club near you. Here is part of a speech that I developed at Klassy Talkers:

Packing

The Philly ride is right around the corner, I am going to fly out there a week from Monday and spend the week in Philadelphia and then the ride is on the 25th. One of my projects for the upcoming week is to figure out how to pack up my trike so I can take it with me. I went by Bicycle Chef today and they gave me a couple of boxes that I am going to use to make one larger box that will safely carry my trike.
I have to figure out how to get this trike into these boxes:

Wish me luck, I'll let you know how it goes.

The Hindsight Years

The Hindsight Years is a video series that brings light to positive stories of people with Ataxia. This production was created by Canadian film maker Glenn Ter Borg.

This is part two of the six part series:

Production

I am hanging out with My friend Matt Pegler and we are working on a new video to promote the CHOP Friedreich's Ataxia Symposium that will take place November 14, 2009. We were going to try to have it done by the end of the day but that's in 3 minutes...we may give it a rest after 14 hours in here. We're always so optimistic, but it always takes a lot longer than expected.

Speech to Speech

Today I represented FARA to the California Community Colleges as they kicked off their Employee Charitable Giving Campaign. I was offered this opportunity by a close family friend, Michelle Ellis. Thanks Michelle!

I gave my presentation and heard from 3 other non-profits who were invited to speak at the meeting. One of the other speakers was Dr. Bob Segalman who is the founder of a service called Speech-to-Speech (STS). STS provides communication assistants (CA's) for people with difficulty being understood by the public on the telephone. Speech-to-Speech is of relevance to the FA community because many FA patients have difficulty communicating on the telephone due to our progressive speech disability. STS is available for business, medical, and personal communication. STS is available in all 50 states, plus the Virgin Islands, Puerto Rico, Australia, New Zealand Sweden. STS is easy to use and available from every phone and does not require registering to use. Just pick up the phone and dial 711 and request a Speech-to-Speech Operator. Your family, friends and business acquaintances can call you and use the STS services just as easily.

I was totally unaware of this service before today and it is a free service that anyone can use anytime we pick up the phone. Dr. Bob said it is Sacramento's best kept secret aside from the amount of money the legislators receive from lobbyists. Here's how it works:
Call 711 and ask for Speech-to-Speech or in California dial 1-800-854-7784. You will reach a communications assistant who has specialized training in listening and is able to understand speakers who have problems speaking loudly or clearly. The trained communication assistant repeats the exact conversation you request to the person you are calling. All conversations are private and confidential, there is no censorship. Callers can use this service as often as they want - 24 hours a day, 7 days a week - conversations have no time limit. Find out more about STS at speechtospeech.org.

After we all gave our presentations, Michelle invited me to lunch with her and Dr. Bob. I found out that there is a lot more to Dr. Bob than just being the founder of a national phone service for disabled people. Dr. Bob is the only person with Cerebral Palsy to hold two PHDs and he wrote a book about his life with a disability. We had a great time at lunch and I am going to start reading Dr Bob's book tonight! Find out more about Dr. Bob Segalman at drbobsautobiography.com.

Me, Dr. Bob, LaCandice (Dr. Bob's CA), Michelle

Brianne's Story

“…the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.”

My outlook on life has changed quite drastically because of Friedreich’s Ataxia. I live life for today; for this very moment. Not for yesterday, that’s done. Not for tomorrow either, that’s not looking too bright. I make an effort to get the most out of each moment.
Let’s backtrack a bit… my kindergarten teacher noticed that I was “different” than the other kids. Different being that I sat down a lot instead of doing the standard kindergarten thing; I didn’t play to exhaustion like all the other kids. I went through elementary school with everyone thinking I had a balance problem, because that is what I understood, and told them. The doctors had no idea why. I was finally diagnosed at about 10, after years of seemingly pointless testing. Now I am in my thirties, and I’m happy to say that I live on my own, I have my own apartment and my own car, just like everyone else. I have also experienced various sports, extreme sports you could say.
I continue to struggle against my FA, and enjoy doing it. Why should I sit back and make it easy for FA to run its course? I take an adaptive PE class twice a week, do hippotherapy (horseback riding) every other week, go swimming once a week (when it’s warm enough) and go to the gym whenever I can. This is my weekly routine.
On the more extreme side of things, I snow ski each winter, I go camping, rafting, and skydiving numerous times in the summer. I’ve been parasailing, and I am going to try paragliding.
I may be stuck in a powerchair, I may require a lift to get around my apartment, I may need a speech amplifier and hearing aids, but the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.

Today is my Birthday (actually it ended about 20 minutes ago). I realize it will not be my birthday by the time you read this but on this occasion I feel like it is appropriate to draw attention to my fundraising page for Ride Ataxia Philadelphia. Here you can make a donation, view my progress toward my fundraising goal and view the overall progress toward the entire event goal. We are off to a strong start but we need your help to get us there. Thank you for your support!

Recovery

Just got back from a ride and I have a million things to do today (don't we all).

Often times when I finish a ride I shower, get dressed, then I'm off doing my million other things. Then a couple hours later I crash (just completely run out of energy). This is because I overlook the recovery part of my workout. I often don't eat enough after a ride to allow my body to recover. Three years into my cycling experience I am finally realizing that I need to slow down and be mindful of the recovery process after my rides.

So this morning I ate right when I got off the trike, I iced my knee, took a rest for a bit, took a shower, got dressed and now I'm off to do a million other things...

Every Day in October

If you haven't noticed, I have been posting every day for the past few days. There is a lot of exciting stuff to communicate lately and I would like to let you know about all of it. For that reason I am going to try to post a blog at least every day for the month of October. I have never tried this before and it is already proving to be a challenging task. However I am going to give it my best. You might get some posts at 1159pm because I had already gone to bed and remembered just before I fell asleep. Also I am going to be traveling to the Philly Ride which will make things challenging but lets see what happens. I hope to see you here every day!

If this post did not satisfy your appetite for entertainment, please check out this post from a couple years ago, its one of my favorites.

Friendly Reminder

About FARA:
Friedreich's Ataxia is a genetic, progressive neuromuscular condition that affects all muscle coordination from the toes to the fingertips. FA has side effects such as scoliosis, diabetes and serious heart complications. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s. The Friedreich's Ataxia Research Alliance (FARA) is supporting promising research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms. http://curefa.org.

About Ride Ataxia:
Kyle Bryant founded Ride Ataxia in 2007 with a 2,500 mile ride from San Diego, CA to Memphis, TN. Since then Ride Ataxia has become a national powerhouse travelling 3,300 miles in the past three years, raising invaluable ataxia awareness and bringing together $700,000 in research funds. With Kyle Bryant as the Program Director, Ride Ataxia now operates as a FARA program and in 2010 Ride Ataxia will feature challenging and family friendly rides in Sacramento, CA, San Diego, CA and Philadelphia, PA. The event will expand to Dallas, Tampa, Atlanta, Boston, Chicago, St. Louis, Seattle and beyond in the near future.

The mission of Ride Ataxia is to Educate the public about ataxia by drawing attention through acts of physical endurance, Enable the advancement of ataxia research through collaborative financial support and Empower Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength. http://rideataxia.org.

Ride Philly Registration

The registration for the Philly Ride is going very well! We already have 125 participants signed up with room for many, many more. So please click the link above or visit this website: rideataxia.org/philly to register online.

For those of you coming from out of town (like me), we have reserved a block of rooms at a pretty good rate in a couple different hotels (click here for hotel information). The room blocks are almost full so call soon!

Registration for the Philly Ride ends October 18 so sign up now and start raising funds! We have reached 20% of our fundraising goal with only a few weeks remaining! I am confident that we will reach our goal! Check our progress or make a donation at the FUNDRAISING PAGE.

PS - Check out this press release about the ride.

Full Speed Ahead!

I am excited to announce that I recently became a full time employee of the Friedreich's Ataxia Research Alliance (FARA). The main purpose of my job is to expand Ride Ataxia with the thought that it might become a revenue stream for the organization with rides all over the country. I could not be more excited about this opportunity to continue pushing the limits and seek my passion full time!

My first week at work was a benchmark week for me. I spent the week in Tampa with Juliann Green (FARA development officer) and Jennifer Farmer (FARA executive director) and we had a crazy week full of presentations and meetings capped off by the taping of a television show (NBC Daytime) which aired in 99 different markets all across the country!

I can't wait to see what the future holds for me personally as we work together to raise awareness and research funds for this important cause. The cure is out there...

USF Symposium

Hi Folks,

I realize its been a while. Check out this article about the FARA - USF symposium last week: http://hscweb3.hsc.usf.edu/health/now/?p=7640

Time Trial

Teammate Intro: DIEGO

Trike Commute!

Little Man, Huge Heart

So I came home from the FARA Therapeutics Symposium last Sunday jet lagged, exhausted and more motivated than ever. Spending a few days with the world's leading scientists who are using the money that we raise to find a cure for the disease that alters our lives could not have been more rewarding.
Dr. Mark Pook and Dr. Jim Rusche; both are past recipients of funds raised by Ride Ataxia

When I got home, I was going through my mail and I came across an envelope with second grade handwriting on it. I opened it up and this is what I found:

Enclosed was Jacob's cash donation. Wow, that's pretty powerful. I spoke at Pleasant Ridge School (my alma mater) a couple times and this little guy remembered very clearly, he even spelled Ataxia correctly! Thanks Jacob, you provided another boost at the end of an exciting week!

Presentation

Here is a short clip of my presentation at the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. I'll get better at the videography, I promise...

Visualization

I am speaking in the morning. I get pretty amped up when I am preparing for a speech. I plan out what I am going to say in my mind and then I imagine myself delivering the message and I imagine the audience reaction, I kinda go through the whole thing before hand so when I get in front of the audience I have already given this speech to this audience in this very situation. I guess you might call it visualization...

So I decided to prepare during a workout on the stationary recumbent bike in the fitness center here at the hotel tonight. My target heart rate zone for tonight was 135-140 bpm. So I started pedaling and I reached 135 comfortably and I was holding pretty strong. So I took my eyes off the heart rate monitor and started thinking about what I am going to say in the morning. I imagined introducing myself, thanking the researchers for all their work, telling them that we are rooting for them, telling my story from diagnosis to triumph and research funds... I finally looked down at my heart rate monitor and It said 155 bpm, I overshot my target a bit. Wow I got pretty amped while imagining myself in front of the crowd. I might even work speeches into my regular workout routine, perhaps I will wear my heart rate monitor in the morning and it can serve as a workout...

Scientists

I am spending the week in Philadelphia at a meeting of the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. Its pretty nuts hanging out with a bunch of researchers and scientists. Something truly amazing happens when you get all this brain power in the same place and concentrate it on a common goal, its like a little kid burning ants with a microscope...kinda. For example, tonight I was sitting at the dinner table with a bunch of researchers that represent different research and scientific entities around the world and they were talking about phenotypes and enzymes and mitochondria and I got lost very quickly. However, it seems they could go on for hours about this stuff. They get it and they are sharing it with each other here this week. All these ideas from all over the globe are coming together in the same place to share and learn in the quest for a cure.

A great thing for me is to realize that we (the lay people, the passionate fundraisers, the Ataxia community) are a huge part of the process, we are part of the energy that gets concentrated to create the heat that burns the ants...is this metaphor working? An illustration of this point: at dinner I was sitting next to Dr. Miriam Rai, who works in a lab in Brussels, Belgium under the direction of Dr. Massimo Pandolfo. Miriam was telling me about some compounds that she is studying. She gets these compounds (HDAC inhibitors) from Repligen corporation who is operating with money that they received from the grants that were funded through Ride Ataxia II. It was truly rewarding to see that our efforts are being put into action in the laboratory. Team Ride Ataxia and all the grassroots fundraising efforts are what is driving the research! We are a huge part of the solution!

Ride Ataxia Philly

Hey folks. I am super excited to announce the next event on the Ride Ataxia Calendar. Ride Ataxia has been working closely with Outback Steakhouse and FARA to put together a one day ride in Philadelphia in October. This will be the first Ride Ataxia event on the east coast! We hope that a smaller event like this will allow for more participation from those who could not commit a week or 10 of time to our previous events. This event is going to be a lot of fun with different lengths of rides to span the spectrum of abilities, great food from Outback Steakhouse, Bonefish Grill, and Carabba's Italian Grill, and fall festivities for all ages.

We will have online registration and more info available soon. For now, mark your callendar for October 25, 2009 for Ride Ataxia Philly! For more information please visit http://rideataxia.org/philly.

Training Program

So I am starting a new training program on Monday and tonight I went in to visit my trainer, Dirk, for a baseline Anaerobic Threshold test. This test tells us what kind of shape I am in so we can design a training program to fit my needs. Specifically this test tells us my heart rate and pedaling efficiency at different stages of exertion. Now we can design my training program to target certain heart rate zones to work in.

So we set my new trike up on a stationary trainer. This trainer was hooked up to a computer and told us my power output in watts. We also hooked up a little magnet on my crank that told us how fast I am turning the crank. The combination of these two mechanisms told us my pedaling efficiency and the distribution of power between my two legs. The last component was the heart rate monitor that was hooked up to my chest. This allowed us to set the five heart rate zones for an optimized training plan.

So all of this stuff is hooked up to me and my bike and all the data is being displayed on the screen in front of me. Also on this screen are two cyclists. One represents me and one represents the guy I am trying to keep up with. During the test, this other guy kept getting faster and faster and the resistance against my pedaling kept increasing. All the while Dirk is asking me to tell him how hard I am working on a scale of 1-20...In the end the other guy took off and I was left in the dust at a 19 effort level...I have lots of work to do.

During the first stage of the training I will work on building a strong BASE (leg and core muscles) which will allow me to train more aggressively without threat of injury. So we went over some strength building exercises to be done with the aid of an exercise ball.

The threshold test felt like a Gatorade commercial which was pretty cool and I am stoked to have some direction in my training and to be able to measure the results. Now I just gotta make it happen!

New Trike!

I got a new trike in April and it is going to allow me to go farther and faster than ever before! The purchase of this trike was made possible by the Challenged Athletes Foundation. For those fellow disabled athletes out there please check out the CAF website for information about how you could receive funding for sporting equipment, entrance fees and travel for competition, and training.



Also, my friend Dynah was funded by CAF this year too, check her new trike out here.

Research!

2009 Kyle Bryant Translational Research Award sponsored by Ride Ataxia, the Friedreich's Ataxia Research Alliance and the National Ataxia Foundation

June 1, 2009 — The Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF) invite proposals, under a competitive Request for Applications (RFA) process, to award grants focusing on pre-clinical and clinical investigations that will advance treatments for Friedreich's Ataxia.

FARA and NAF are grateful to the Ride Ataxia cyclists and supporters as well as sponsor Outback Steakhouse who collectively raised $260,000. FARA and NAF will provide matching funds to bring the grant award total to $360,000. As a result a total of three awards will be funded under this program, each limited to $120,000 (direct costs only). Two awards will be funded by FARA and NAF, and the third award will be funded by FARA made possible by the sponsorship from Outback Steakhouse.

Proposals should be for pre-clinical / translational or clinical research focused on Friedreich's ataxia with aims such as identification of biomarkers for FA, development of animal or cellular models to evaluate candidate therapies, development of tools or technologies for therapy development, pre-clinical development and testing of potential targets, or clinical studies of patient outcome measures.

A full list of proposal guidelines and the application can be accessed at http://www.curefa.org/grant.html. Applicants must complete the Kyle Bryant Translational Research Award application form.

Applications will be accepted from for-profit organizations, non-profit organizations, public or private institutions, and foreign institutions. By July 15, 2009, a letter of intent should be submitted with the title and a few sentences describing the focus of the proposal. The application / proposal is due on July 31, 2009.

Letters of intent and applications are to be submitted electronically to jen.farmer@cureFA.org and susan@ataxia.org.

About FARA
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. http://www.curefa.org

About NAF
NAF is a membership supported, nonprofit organization established in 1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families. http://www.ataxia.org

Contact
Jennifer Farmer
Executive Director, Friedreich's Ataxia Research Alliance
(484) 875-3015
info@curefa.org

Michael Parent
Executive Director, National Ataxia Foundation
(763) 553-0020
mike@ataxia.org

Kyle Bryant
Founder, Ride Ataxia
(916) 203-3238
kyle@rideataxia.org

This announcement can also be found on the FARA website here.

2009 AAI

The Ataxian Athlete Initiative (AAI) is a program aimed to introduce cycling to Ataxians by funding the purchase of a new trike. This year Ride Ataxia received 6 applications from aspiring Ataxian athletes. Unfortunately our resources limited us to a choice of only one recipient. Our panel found the choice very difficult but in the end we were confident that our selection, Nadia Robertson, fulfills the spirit of the AAI with the willingness to stay active and encourage fellow Ataxians to do the same.



"I don't plan to stop exercising until it becomes physically impossible, which I hope is never...I am already a wheelchair user so hopefully I can inspire Ataxians who are on my same level to stay as active as possible."

Nadia Received her trike in early April and has logged quite a few miles since. She has been reaching out to fellow Ataxian Athletes for advice; keeping us in the loop the whole time:

"My ankles had been rolling in my cycling shoes so I bought some tie-up ankle braces today. I talked to Chris Meyer, a fellow FAer who has a trike, and I guess we're closer progression-wise, so he gave me some adaption tips."

With the help of the 2009 AAI we are positive that Nadia is improving her health and confidence.

The future of the Ataxian Athlete Initiative is very bright. We hope to expand the effort with more funding. This will allow us to fund more athletes encouraging our community of Ataxians to stay active!

Dr. Perlman

“For 20 years all I could do was tell my patients there were no cures, try to treat their symptoms, and fi ll out their disability forms,” she says. “With the development of molecular genetic technologies and the ability to identify responsible genes and understand their proteins, in the last decade we have begun to design treatments aimed at the disease itself. I am very optimistic about what lies ahead.”

Read more here (page 4): Partners in Discovery

Evan's Walk

This weekend I went to a fundraiser in Cincinnati Ohio in celebration of Friedreich's Ataxia Awareness Day. The fundraiser was a 3K walk/run organized by the Luebbe family. Evan Luebbe was diagnosed with FA when he was 8 years old. He is now 12 and has a much older personality. I hung out with Evan and his family this weekend and had a blast.

The event went off without a hitch because of huge support from community volunteers. This was the 5th year of this event and it showed as everything fell into place. Everyone had a great time with carnival games including a dunk tank (in which they could soak their principal), a silent auction, raffle, lunch from Outback Steakhouse, a short presentation about FA, and a magic show!

Initial estimates are that there were more than 200 walkers/runners and the event raised more than $25,000.

Thanks Luebbes, I had a lot of fun. You are truly making a difference!

Back Row: Felicia DeRosa, Greg Luebbe, Tammy Luebbe, Pamela Rasey Front Row: Graham Luebbe, Evan Luebbe, Me

My New Sport

Its late and I need to get to bed but not before I tell you about my rowing experience.

I became interested in rowing after I heard about these two crazy guys who are going to row across the Atlantic in support of Ataxia UK: http://www.rowingtheatlantic.com/. I love this and I hope they know they've got our support!

I was very intrigued by the proposed journey for Ataxia and as I searched around I found many other people who had made the journey. I spent many hours reading about different journeys across the Atlantic and watching YouTube videos about it. One person I ran across was Roz Savage who gave up her desk job to train and row across the Atlantic. Roz is currently in Hawaii after rowing her first leg of the Pacific from California. The second leg of her Pacific row starts in 16 days.

So there are lots of inspiring stories about rowing and I got interested a while ago but just this week I had the opportunity to try it for myself through a class at the Sac State Aquatic Center. The class was 4 days, 2 hours each night.

Monday night we watched a safety video and then took a boat down to the dock to just sit in it and see what it feels like. I sat in the boat and immediately felt like I was going to tip into the water! I was thinking 'There's no way I can do this. Ataxia is going to make me unbalanced and send me into the water as soon as I get away from the dock.' But our instructor, Rudy talked me through how to stay balanced using the oars as leverage on the water. I was still a bit skeptical but I came back the next night.

Tuesday night we each got a boat and we ventured away from the dock to try some things on our own. I was still quite shaky but when I slowed way down, relaxed and thought about what I was doing it went ok until I lost focus (which was quite often). When I was really struggling Rudy walked me through the things I needed to do and it all came together. Much improvement and some fun.

Wednesday night we spent an hour and a half in our boats and I improved a lot but I also struggled quite a bit. It was a little windy that night and I had to keep correcting my course quite often which meant turning the boat sometimes 180 degrees. This proved to be a challenge as I struggled to figure out the right blade position for my oars. At the end of the night I was exhausted but I could not wait to try it again. It seemed like my skills improved each night as I struggled through the rough stuff and enjoyed the good strokes.

Tonight we ventured even farther into the lake. The wind was blowing pretty hard when we showed up and we almost called it off but the wind died down to a reasonable breeze and we gave it a try. I felt so much more comfortable and confident tonight and these feelings translated into some decent rowing strokes. I had a lot of fun tonight and was much less exhausted because I was actually rowing instead of flailing around.

At the beginning of the week I was pretty freaked out and unstable. I was ready to call it a loss on account of ataxia. However I stuck with it and found that it's just a matter of getting out there and seeing what happens. I look forward to more rowing as I try to incorporate it into my fitness routine.

Training For Next Year

After Ride Ataxia 3 (about a month and a half ago) I was sick for 2 weeks straight. At a couple points during that time, I thought it was never going to end. However after two weeks of couch time and some thrilling surfing on my way too basic cable I finally pulled out of it and now I am back to feeling 100%.

During the two ill weeks I did absolutely zero physical activity and my muscles tightened up big time. The muscles holding my knees together were so tight that it was painful to ride. I was a little concerned so I paid a visit to Dirk, my Physical Therapist, who told me that there is no reason to be alarmed, I just needed to get loosened up. So I massaged and stretched the heck out of my legs for two weeks in preparation for the Chico Wildflower ride. The ride was yesterday and there was a strong presence from the Ride Ataxia Cycling Team.
Left to Right: ED, Chris, Becky, Karen, Stephanie, Diane, Mike, Me, John. Not Pictured: Tess, Mark

There were many options for the ride. A century (100 miles), 65 miler, flat 60 miler, flat 30 miler. John was the only brave soul to complete the century (his first century), congratulations John! A few of our group modified the century route to complete about 85 miles, some of us did the flat 60 miler which turned into about 75 after we got lost, hooray! And a couple in our group completed the 30 miler, congratulations ladies!

The weather was fantastic and we all had a great time. We enjoyed a large meal and massages at the end.

Today I was very tight but it could have been much worse. I am headed back to see Dirk to make sure I continue to stay loose!

Reflection

We left Seattle about a week ago and after surviving a terrible fever I have had time to reflect on our Journey. I spoke with a few teammates and the general feeling is that the time spent on the bike was wet, cold and extremely difficult. However everyone came away with a positive experience. Each person challenged him/herself every day and in the end we came together as a team to encourage each other to the finish each day.
I think everyone agrees that this is not something that any of us would have done if we did not have a reason to ride out on a limb for a deserving cause. In fact, at times the travel was quite treacherous:
But despite the horrendous riding conditions we managed to have fun:
And we kept moving toward our goal with purpose. Our purpose was to improve ourselves personally in hopes that we would benefit others at the same time. I am confident that we accomplished these goals as I hear positive feedback from teammates and as I see the research dollars continuing to trickle in. We have already doubled our fundraising goal and the total keeps rising as we passed $220,000.

There were a number of defining moments during this ride, but a particularly significant one came 2 miles before the end on a 21% grade incline. Without a feasible alternate route, cyclists were left with no other choice but to climb this wall of a hill. In a striking parallel to facing the challenges of life with FA, the nearly 70 cyclists dug in and approached the uphill battle with determination and perseverance. Many of the recumbent trikes were unable to gain traction on such a steep incline; so their teammates abandoned their bikes and helped push them up. Other teammates picked up the abandoned bikes and cyclists reported that very few words were exchanged- just recognition of need followed by action.

Morning Show

Hi.

The NAF conference was fantastic as usual and we are headed home now. I will have some thoughts and reflections soon but in the mean time, I will be on a morning show in Portland in the morning. Not sure if you can watch live on the web but check it out: AM North West

Victory!

We rolled in to the hotel this afternoon as a huge group. We were welcomed by a crowd of smiling faces. Ron Bartek, President of FARA said a few words and then Mike Parent, Executive Director of NAF said a few words and then we honored each rider with a medal to remember the ride. Unfortunately I do not have any pictures at this point but I hope to post some tomorrow.

I am extremely proud of our team and the personal accomplishments of each person. Additionally we have passed $220,000 in fundraising!

Stay tuned, more to come...

Triumph

Today started slowly and painfully for many of us. Personally, during the first half mile of the day, I was unsure that I was going to be able to last all day because of the pain in my knees. However, we pushed through the pain and loosened up. The weather was relatively nice today and we had a slight tailwind to help us along.

We rode for about 20 miles through a town and down some country roads. Then we hit a bike trail and we were cruising. The tail wind and the smooth surface helped us reach high speeds with little effort. We rode this trail all the way to lunch at mile 28.
TEAM!

LUNCH

MOM AND DAD, the two that make it all work.

We stopped for a quick bite and were off again. Shortly after lunch the trail ended and we missed a turn...we got lost for about a half hour. When we finally found our way back, we were cruising again at high speeds.

The day dragged on toward the end and the knees began to stiffen and the pain returned but we struggled through to the end.

I am so proud to have finished the ride today because I really did not think it was possible when I began.

We had one last team dinner at an Outback Steakhouse restaurant. The food was fabulous and we shared a few stories from the road, people talked about their favorite parts of the ride and we had a lot of fun remembering what happened over the past few days.

Tomorrow is the final day of Ride Ataxia 3. We only have about 30 miles and we are due to arrive at the National Ataxia Foundation Conference at 2pm. It will be a day of triumph!

COLD!

We left this morning from our hotel at about 9am in a downpour.

Today was a short day (40 miles) but the weather made it seem like much more. We can all deal with the wetness at this point but today was particularly cold... Most of us went for several hours without feeling in our toes. The only way to warm up was to ride as hard as we could to get the heart pumping and the circulation going to the extremities.

After our lunch stop quite a few groups of us rode past a loose dog who was not friendly. Several people were chased at high speeds. One story was that the dog could run at 19 miles an hour while barking, growling and snarling. Luckily nobody got hurt and the dog had fun today with lots of people to chase.

Here we are at the world's largest egg:


When we finally reached our destination, we thawed our fingers and toes and headed to dinner at the historic train depot in, Centralia Washington. We were honored to have the mayor of Centralia along with the operator of the train depot, Pollo Enriquez with us at dinner. The city generously provided the space to us free of charge.

Our dinner was once again catered by Outback Steakhouse and their volunteer crew. The food was fantastic (ribs that fell off the bone smothered in BBQ sauce...garlic mashed potatoes, wild rice and cinnamon apples for dessert). Outback has been a HUGE supporter of the ride this year. They are an organization dedicated to service and community. Thank you Outback.


This day was brought to you in part by the OB Beer Club. Happy Saint Patrick's Day!

Big day tomorrow. 62 miles, bring on the rain!

Weather and Bridges

Craziest day ever! But let me start from the beginning.

This morning we had a nice send off ceremony at OHSU. Three Doctors/Researchers told us a little about what they do for Ataxia. We heard from Dr. Maylie and Dr. Nutt both from OHSU and we heard from Dr. Scutt who is the Medical director for the National Ataxia Foundation. All three gentlemen gave very nice talks about what they do and all three stressed how important it is to have funds from groups like ours to help get research off the ground.

Gathered outside the building, here is the whole team:


We then took off through downtown Portland and once again it became apparent how many people we had on this trip. It was pretty fun to travel through downtown turning heads as a huge, strong team.

When we got out of town, we hit the highway and it immediately started pouring rain. It started getting a bit miserable but as soon as my clothes soaked through, my body heat warmed the water that was next to my skin and I started warming up. We had heavy rain, light rain, sunshine and rolling hills until lunch. Lunch was pretty sunny and we had some fun:

After lunch we ran into more ridiculous weather...much more rain...and hail for about 5 minutes. We crossed some railroad tracks and 3 of our teammates fell pretty hard at the tracks, one requiring minor medical attention but our SAG team took care of business and everything is fine.

At mile 51 we crossed the Louis and Clark Bridge form Oregon to the state of Washington...Everyone had been talking about this bridge and how scary it would be...the bridge lived up to the hype. The Bridge was about 2 miles long and it had a small bike lane on the shoulder. It was pretty darn steep on either side so it was a slow climb followed by a screaming down hill. We crossed the bridge in a group of four: Me, Mike Bryant, Uncle Steve and Sean Roberson. When we reached the halfway point of the bridge (the highest spot) the rain began to turn very heavy and was between rain and snow, the wind was blowing very hard and the bridge began to sway a bit. The trucks to our left were causing the guard rail to rattle as if it were going to fall off. Then we began our descent. We landed on solid ground as soon as possible and as soon as we got off the bridge, the sun came out...Mother Nature was playing tricks on us.

We are all safe and sound in our hotel in Kelso. I believe we got the GPS working so you can track our progress daily from the link directly above this post. WE're on our way. One down three to go!

Check out the local news coverage from News 10!

SHOUT OUT:
This one goes out to our friends in Martinez, CA. Angela and Ricky are kicking butt. Thanks for the support! See you soon!