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Some of the Many Reasons

 

From the time we were convinced that something was wrong, it took us (my family and I) over a year to find the answers we were looking for. My Dad noticed that my skills were deteriorating in sports, specifically baseball. So he convinced my Mom and I that something was truely wrong. We went to a neurologist once a week for a while so he could run all kinds of tests, he had no idea what was going on. Many doctors, many wrong diagnoses and many months later, we found a doctor who took one look and knew right away that I have Friedreich's Ataxia...

Nobody knows about Ataxia (even doctors as I found out), that is why I am riding across the country, this disease needs some attention. It is estimated that one in every 50,000 Americans has Friedreich's Ataxia, yet nobody even knows about it.

I am also doing this beause I am one of the lucky few Ataxians who can still get around without the use of a wheelchair. The ability that I have will be gone at some point, I feel an obligation to do as much as I can while I still can.

 

 

 

 

 

 

 

 

Ride Ataxia Events: Golf Tournament

 

Fundraiser outcome...Overwhelming
For those of you who participated in the golf tournament, thannk you. It was a huge success, raising $9,800. This money will fund my ride and then some. I will donate the "and then some" to FARA.

For those who did not attend here is a brief rundown: 24 teams of four, 28 hole sponsors, and 150 people at dinner that night. I think everyone I know was at dinner that night. Everybody stuck it out through tripple digit herat and had a great time.

Thank you to all the great people at Lake of the Pines and the surrounding community, you have built something great, keep it up!







 

 

 

 

 

 

 

 

First Post



First post...

My fundraiser is coming together. I have been thinking about ths thing for about 9 months now. I have to wait another 6 until I leave and then another 2 until I reach Memphis. I am pretty stoked, I want to leave tomorrow.

I have been training quite a bit lately, trying to ride during the week and riding 60+ miles on the weekends. I rode my first century ride on May 7 in a fundraiser for the American Diabetes Association. It took me about 9 hours due to a flat tire and a wrong turn. I was the last one on the course, but I finished.

I am planning on averaging 60 miles a day for almost 2 months. Its going to be very challenging but its gonna be a blast...more details later.


Saturday Ride

 

 

I went on a ride yesterday from my apartment in downtown Sacramento to Nimbus Dam in Folsom (45+ miles round trip). The most current heat wave has passed and temperatures are in double digits again so it is safe to train in the afternoons.

This ride took me a little longer than it should have because I havent been training very heavily in the past couple of weeks. It has been too hot to go outside. However the heat wave is over for now and I am going to try to train hard until the next wave...

Me, halfway through my ride with Nimbus Dam and the American river in the background:

 

 

 

 

 

 

 

 

Subcategories

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


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