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Press - Radio Interview

Hey folks. I want to inform you about a radio interview that will be happening next thursday (March 13). The interview will feature yours truly plus Sean Baumstark, plus a call in from a researcher in the Ataxia Research Community. We will be discussing the impact of Ride Ataxia and the current state of research for this disease.

The live interview will air on Capitol Public Radio for 20 minutes sometime between 2pm and 3pm. Here are the stations on which it will be broadcasted: 90.9 FM KXJZ Sacramento; 90.5 FM KKTO Tahoe/Reno; 91.3FM KUOP Stockton/Modesto; 88.1 FM KQNC Quincy.


TUNE IN!

 

 

 

Update

 

We are quite busy making the final preparations for the ride. It is going to be quite an adventure with more than 30 participants for the first day. We invite you to join us as we take off on March 15 from the southwest corner of the CA state capitol building (Corner of 10th and N). We will be taking off at 9am sharp so plan accordingly. We hope to have a LARGE cheering section as we take off. We are also hoping for press coverage that morning, we have a few things in the works.

 


Fundraising:

We have already shattered our fundraising goal of $50,000. To date, our fundraising total is $63,700 and the total is growing everyday. I do not wish to discourage any donations by letting you know that we are over our original goal. On the contrary, I hope this encourages you to make your donation big or small. Every penny that is given in honor of Ride Ataxia to either the National Ataxia Foundation or the Friedreich's Ataxia Research Alliance will fund the collaborative research projects of these two organizations. Ride Ataxia has requested that this effort be focused on translational research that will help bring treatments from the lab to patients like me and many others. The collaboration of these two organizations will bring forth the most promising research in the world. To make your donation please visit http://firstgiving.com/rideataxia and follow the "instructions for donors" or just respond to this email and I will hook you up.

 


Press:

Please check out these links. This first one is a short video that will air locally here in Sacramento 5 or 6 times on PBS: http://www.youtube.com/watch?v=xGeALpTeSZM

This one is an article about the efforts of our Friends Andy and Linda Johnson. The Johnsons are the breakout story of the year for Ride Ataxia. The Johnsons have already raised over $16,000 and have drawn a lot of press attention in their hometown:
http://www.syracuse.com/articles/madison/index.ssf?/base/news-9/1204192722319080.xml&coll=1

Thats all for now. I hope to see you all on March 15. 2 WEEKS UNTIL GO TIME!


On The Side:
I have to let you know about this new article written by my good friend Matt Strugar-Fritsch. This article is about disabled whitewater sports and will appear in the March issue of Sports and Spokes which features Matt on the cover! This article has nothing to do with the ride but it I am a huge fan of Matt's writing and I hope you like it too:
http://www.pvamagazines.com/sns/magazine/article.php?art=2397

 

 

Fun, Outreach, Training

 

Fun:
Last tuesday the Tour of California came through Sacramento. Their day ended at the capitol building downtown (the site of the send-off for Ride Ataxia II). So I took a few hours off work to check it out. I had never been to a cycling race of this caliber before (I was somewhere in Texas at this time last year). I secured a spot about 200 meters from the finish line.
The peleton took three laps around capitol park before they sprinted to the finish so I got to see them four times. I waited for two hours before they first arrived and it was well worth the wait. These guys were crazy. They were going over 20 mph and there was not more than a couple of inches between cyclists in the pack. When they passed me for the fourth time, it was an all out sprint. The peleton quickly changed shape as each cyclist jockeyed for position, cutting each other off, I'm sure there was some language in the group that my mother would not approve of. Finally, Tom Boonen crossed the line first and was awarede first place for stage two.


Outreach:
On Friday I gave a presentation at my elementary alma mater, Pleasant Ridge School. I spoke in front of 250 rad kids and I saw some teachers whose classes I was in a long time ago (like 17 years), I had a lot of fun. At the end, the student council gave me a donation for research, a Pleasant Ridge Roadrunners t-shirt, and a cookbook that was put together by parents. Thanks Roadrunners, its great to have support from my roots!



Training:
First, let me introduce you to a friend of mine. This introduction is long overdue. This guy has been a huge part of Ride Ataxia II. This is Sean Baumstark:

(Sean is on the right)

Sean has been a huge part of the vision and execution of Ride Ataxia II. Sean always seems to know what we need and how to get it. He is on my speed dial, anytime I need to make a decision I talk to Sean and things get done.
Sean was Diagnosed with FA about 8 months ago and is driven to find a cure. Here is how I first met Sean:
"I just stumbled onto your story, and your website. I'm 25 and was diagnosed with FA last week. I'm also a resident of Sacramento. In fact, if you work in Rancho Cordova, our foot or drive patterns have probably crossed. Uncertain that this email will find you, I won't waste a lot of key strokes. If possible, I'd like the opportunity to meet you, and possibly work on any future fundraising visions you may have, or may come up with in the future."
We had lunch a few days later and we have been working together ever since. Sean jumped right in with huge support from his Family, Friends and Coworkers.

Sean and I along with 11 other teammates geared up and met for a training ride on Saturday. Our goal was to put in a bunch of miles to test ourselves and our equipment to see how much it will take to be ready on March 15. We started the ride with 13 team members and finished with four. I will spare some details but I want to give you some high lights.
It was pretty darn cold and it was threatening to rain the entire time. So we all met at Discovery Park and geared up with our gloves and ear warmers, little booties that fit over our cycling shoes and plenty of lycra.

Sean, Travis, Doug, Glenn, Mike M., Collin, John, "That Guy", Roberto, Neal, Libby, Mike B., Diane, Me (in front)

Doug and Mike B. turned around after about 10 miles which means they ended up with 20 miles. Neal and Libby turned around at 15 miles and reached 30 miles on the day. The rest of us continued on to Nimbus Dam which is at mile 23. We all wanted to grab at least 50 miles so we continued around Lake Natoma, which added about 12 miles. When we got back to Nimbus Dam, we were on the home stretch. We were at mile 34 with 23 miles remaining. Sean had a flat so we accompanied him while he installed a new tube. A couple of us (including myself) were feeling the effects of the long miles so we left before everyone else figuring that they would catch us pretty easily. About 15 miles later, Sean, Mike M. and Travis still hadn't caught up so we pulled over to give them a call.

It turned out that Sean's tire went flat again. He replaced the tube once again and stuffed the old tube into the front pocket of his jacket. As he continued down the trail, the tube fell out of his pocket and got caught in his chain. The tube hit his derailer, gummed it all up and the force of his pedal stroke snapped the derailer clean off. Crazy, who knew that was even possible? You couldn't try to do that. So Travis accompanied Sean to a location where they could be picked up and Mike M. cycled on. Mike M. met up with us with about 15 miles left. I was really feeling it and it would have taken me a long time and a considerable amount of agony to make it to the end so I split off and rode to my house with 50 miles under my belt for the day. Collin, Mike M., John and Roberto finished the 57 miles before the heavy rain started.

Overall it was a very successful day. We learned how much more training it will take before we are ready and we learned not to carry a spent tube in an unzipped front pocket.

 

 

 

Team Training

 

Yesterday morning 6 Ride Ataxia Team Cyclists met for a training ride.


Left to Right: Jina, Collin, Angela, Tess, Me, Mike
Notice the bright sun, smiling faces, and tight clothing.

We started at my house in East Sacramento and headed toward the American River Parkway bike trail. The trail is only about a mile away and once we hit the trail, there is no reason to worry about vehicle traffic. It is really nice to just ride with no worries. Also the trail is 30 miles one way so you can enjoy a nice long ride entirely on the trail.

We went about 17 miles before we had lunch at the fish hatchery and turned around.


This is the "before" picture, there will be no spare tires at the end of the ride. Collin, I think perhaps Buford might be able to stick it out and hang on(Collin calls his gut Buford). However, I hope you will be able to carry on if he decides to leave.

It was a nice ride and a beautiful day. The most improved teammate award goes to Angela Lacativo-Greene who had never ridden much past the end of the block before this ride. Despite an unfamiliar bike and a sore rear end, Angela powered through and we are all confident that she is going to be a great asset to our team on the road come March 15.

 

 

 

 

Truckee Fundraiser

It is Super Bowl Sunday, that upset was pretty sweet. Before I tell you about the amazing event in Truckee last night, lets reflect back to this day last year: http://rideataxia.blogspot.com/2007/02/superbowl-sunday.html.

Last night, I was in Truckee, CA at a fundraiser that was hosted by my uncle Neal and aunt Libby Lacativo. I was planning on skiing on Saturday at the Disabled Sports Ski School at Alpine Meadows. However, on Friday I woke up with a fever which forced me to cancel my lessons. This unexpected cancellation may have worked in my favor because it was an absolute blizzard in Truckee this weekend and Saturday may not have been a good time to re-learn how to ski after five years of inactive ski seasons.

So I stayed home from work on Friday and Headed up to Truckee on Saturday morning. We (me and my parents) headed up the hill against the advice of friends and weathermen. We took a less travelled route which allowed us to avoid crowds but presented rougher roads.

Traffic and conditions from the drive up.

Before we were halfway there, we passed a truck that was on its roof in the middle of the lane. CalTrans was taking care of it, nice work guys.

WE arrived in good time and began helping with the set up. I was amazed at the variety and quality of the raffle and silent auction items. There were 59 items all together and some of the standout items were: Ski Lessons, lift tickets, airline tickets, an ipod, framed photos, wine etc.

A few of the items.

The most wanted item in the silent auction was a set of 8 origami figures folded with one dollar bills and placed in a museum style frame. This item was crafted and donated by Gladys Lacativo (my grandmother) people loved it so much that the winning bid was $150 and Grandma is being asked to make another one for another $150.

When all was said and done, the event raised $3,900 and despite the insane amounts of snow, we had an overwhelming turnout and we all had a lot of fun. Good friends, good food and good fun for a good cause.

There were a bunch of people that made this night run smoothly including my cousin Angela who busted her tail to balance the books at the end of the night.

Angela and Neal drawing raffle winners.

Thank you to Libby and Neal for organizing this event. Libby spent many late nights following up with donors and making sure the displays for the items looked truly professional.

 

 

 

 

 

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.

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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.

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