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.