Kyle A Bryant

Each year Catrike invites all their loyal fans to come out and show off their tricked out rides and enjoy each other’s company.  The 8th annual Rally was yesterday.

The day started with a gathering of over 200 Catrikes for a ride on the West Orange Trail from Winter Garden to Clermont, FL and back.  I am used to being the only one on a trike (I don’t mind the attention:) so it is amazing to ride in a group where the two wheelers feel out of place! There were 3 different ride lengths to satisfy all riding appetites.

On the right in front is Mark who rode 196 miles on his Catrike in the Sebring 12 hour race a few weeks ago and on the left is “Even” Steven who rode 240 miles on his Catrike during the 12 hour race, that’s an average of 20mph for 12 hours!

One of the unique machines we saw at the rally was a conversion kit attached to the rear fork of the Catrike Trail and Villager which turns the trike into a quad.

Rear View:

This add on was created by Utah Trikes and adds considerable weight capacity and handling stability to the Catrike Trail and Villager models.  The Utah guys said they are working on a cargo rack system for touring or for trips to the grocery store around town. This machine was a lot of fun during my test-ride. If there are any disabled athletes out there who need specialty modifications on your trike, handcycle or other cycling equipment contact Utah Trikes and tell them I sent you, they specialize in modifications so I guarantee that if you can dream it, they can engineer and build it.

After the ride we had lunch in beautiful downtown Winter Garden and then it was off to the factory tour.

Everyone gathered right outside the factory so Paulo, Mark, and Chaim could say a few words and take care of business.  The first thing they did was give me the floor for 10 minutes to give a little update on my programs such as Ride Ataxia and the AAI. I also spoke briefly about FA and gave a little update on FARA research. Catrike has built a community of genuinely good people that love their trikes, have a lot of fun together, and truly care about others. I love sharing my story and connecting with this group because they are true partners in the fight against FA.

After my brief talk Mark honored the top twelve dealers of the year.  The top dealers are an elite group of Catrike enthusiasts who love Catrikes with a passion and provide top notch service to their customers (and they sell a lot of Catrikes!).

Last year during the rally, Mark and Paulo honored their legendary welder, Sherry, with the gift of a Catrike Expedition for her 10 years of service to the company.  This year they gave trikes to each of their employees.  Each person gets the model and color of their choice!

Then it was time for the moment we were all waiting for.  The unveiling of a new Catrike product that would revolutionize trike design.  So they brought out a trike on a display stand covered by a blue cloth.  Paulo built the tension with a few choice words and then unveiled the new machine. This is the 2012 Catrike Road:

Here is a closeup of the rear suspension:

One revolutionary thing about this suspension system is that it solves the problem of power loss due to suspension.  The system remains rigid during acceleration due to the fact that the drive chain (top chain in the photo above) remains below the main pivot point which does not allow the suspension to flex when you pedal.  So there is no power loss when you pedal but the suspension provides a smooth ride when the road gets bumpy. Plus Lynn (Catrike CAD operator and brilliant designer) pointed out to me that there are two pivot points in the system which allows it to keep the rigid, high performance Catrike feel around corners.  It is a smooth ride with the Catrike performance that we all have come to know and love.  Congratulations on another great product guys!

After the big unveiling we all got to take a self guided tour of the Catrike factory where they bend, weld, paint and revolutionize the manufacturing industry right here in the USA.

Catrike is an amazing company that is 100% behind the push for treatments and a cure for FA.  Thank you guys for all your support and for another great rally and Factory Tour!

Ron and I went to an all day symposium at the FDA today. We heard from several different departments within the FDA and we also had time to network with other patient advocacy organizations.

One of the recurring themes today was the extreme importance of involvement of the patient community.  Most of us patients visit one of FARA’s Colaborative Clinical Research Network (CCRN) sites once a year without realizing how important that visit is when it comes time to design a clinical trial.  In order to design a clinical trial you must have clear “clinical outcome measures” to judge whether the drug in question is doing what it is supposed to do.  When we participate in the Natural History Study through neurological exams and things like those annoying visual acuity exams and the dreaded pegboard test, the researchers are collecting critical datsa that allows them to design accurate clinical outcome measures.  The CCRN now has over 6 years of Natural History Data on FA which allows our researchers to accurately characterize the progression of the disease. Therefore when a patient is treated with a drug our clinicians can compare the patient’s neurological exam progression over a certain amount of time against 6 years (and counting) of Natural History data.  FA has very strong clinical outcome measures because we are lucky enough to have a very active patient base who is driving our research.

I cannot work in a lab.  I don’t know what I am looking at when I put my eye up to a microscope.  However I can provide data and I can answer that call when the next clinical trial is recruited.

Today it was clear that the patient plays a critical role in clinical research and it is important that we, as patients, continue to do our part by eagerly participating in the Natural History Study and answering the call when it comes time for clinical trials.

Today Ron Bartek (President of FARA) and I attended an all day symposium at the National Institutes of Health (NIH) in celebration of Rare Disease Day.  Friedreich’s ataxia (FA) is a rare disease with an incidence of 1 in 50,000 (about 6,000 in the US).  However there are many people living with some form of rare disease and when we consider ourselves as part of the greater rare disease community we join a group of 30,000,000 people in the US who are fighting just as hard for a treatment and a cure.

At the end of the symposium today Sharon Terry gave a short talk about how we all need to work together to get the job done.  If we consider ourselves as one cause for Rare Disease we are not so rare and our voice becomes much louder and our actions make a much bigger impact.

FA is a mitochondrial disease.  Lack of a protein called frataxin causes dysfunction in the mitochondria which causes lack of energy, balance and coordination issues, scoliosis, diabetes, and life shortening heart disease.  There are quite a few rare and common diseases that result from dysfunction in the mitochondria: ALS, Parkinsons, Many of the Muscular Dystrophies, MELAS, Leber’s Optic Neuropathy, Diabetes, and Blindness just to name a few.  FARA is confident that a breakthrough in treatment for mitochondrial disease will have huge implications for all of these diseases.  For this reason FARA stays in constant contact with other advocacy and research organizations to co-fund research and share resources.

Ron says “a rising tide lifts all boats.”