Rare Disease Day! And updates

Today is World Rare Disease Day!  FARA will join organizations around the world in observation as millions of patients and their families share their stories to bring attention to rare diseases as an important global health concern.

"Rare disease research benefits more than a singular disease population. It also lends insights into more common diseases. At FARA, we believe collaboration leads us to results quicker. Acting alone there is very little any of us can accomplish. Acting together, there is very little we will not accomplish.”

~ FARA President, Ron Bartek

Marathon training update

Tuesday - 7 miles on the track with TRIbe
                warm up, drills, stadiums, strides
                3 x 800m, 3 x 400m, 3 x 200m descending pace with distance
                cool down, core, stretch
Thursday - 8 miles on trails (Baylands) plus drills and strides
Friday - 5 miles on the roads (Sunnyvale)
Sunday - 20 miles on the Los Gatos Creek trail.  Garmin data here.

The highlight of the training week was the post-long run recovery dinner with JPT.  He was in town for 36 hours to meet with a group at the Hoover Institution.  He gets a lot of requests from NGO's working in arms control and non-proliferation, but only seems to accept invitations in the Bay Area or Boston.  Those Stanford guys really ought to thank me!

Good food

Good company

February fundraising update

When I created my page on the Team FARA site, I had to set a fundraising target.  I chose $2620 because it's a multiple of the marathon distance and it sounded like a lot of money to me.  And after 2 months, we've raised $2795!  Every time someone donates through the website I get this notification email:

"Congratulations! Someone has decided to sponsor you in your participation in Team FARA!"

Those words make my day!  THANK YOU!  Seven weeks to go!

Payback

CMT was mad that I posted her high school graduation picture last week.  Even though she looks adorable!  Fair is fair, here's a picture of me and my dear old friend JPS (she was only JP back then!) on our graduation day in 1998.

Happy to be done with high school!

 Am I forgiven CMT?

Guest blogger CMT

This picture is a good example of our childhood; I'd think up something silly to do and CMT was always more than happy to go along!  And she's still my biggest supporter and faithful sidekick: my Ironman sherpa, Boston hostess, and now guest blogger. Little sisters are awesome!

Team T

Like AT, I learned about FA through our aunt Patti and cousin Garrett.  I was only 2 or 3 at the time, so I have fewer memories of visiting Patti when she lived in Boston.  But we share lots of memories of adventures with Garrett and our Timbie cousins, like attempting to remove a hornet's nest from our grandmother's house by throwing stuff at it from a nearby window.  As the youngest cousins, AT and I were given the job of retrieving the things thrown out the window. 

Sticking together on Cape Cod with Grandma T

Sticking to a train with our cousins, 1990

I learned about FARA when I was in high school, working as an intern in their Arlington office. I was very lucky to get the chance to learn from people who knew so much about scientific research in FA. On my first day, I met investigators working on clinical trials of potential FA treatments. They calculated that since I was graduating high school in 2002, I would be done with med school in 2010 and come back to work on the next round of trials. Ten years later, I'm not quite on track with their projections (but I'm getting there!), while their trials have progressed rapidly. FARA helps support these efforts by funding grants for research related to FA, matching trials with patients, and organizing scientific conferences to spread new ideas and data within the FA research community.

Still on schedule, 2002

What impressed me most at FARA was how much is known about FA, and what an active area of research it is. The gene product and its biochemical pathways are being investigated, and clinical trials and translational research have begun. The FARA website has an excellent summary of the current state of research on FA, available here. Though effective treatments for FA remain elusive, incredible progress is being made, even with me taking too long to finish med school.

Finally, thank you to AT for sharing your race with us and raising money for FARA. Your training summaries make my entire body hurt, but they've been inspirational / aspirational when I'm trying to motivate myself to run in 20 degree weather.  

CMT says Boston is for runners!

Jenny's Light 10K Contest Reminder!

Are you going to let CMT just walk away with the 10K time prediction prize?  Enter your guess back here.

Marathon training, week 7

Happy Presidents' Day!



Can you find JPT?

No holidays from marathon training! Or work, for me.  
Last week I ran the following:

Tuesday - 7 miles on the SUPER windy track with TRIbe
                warm up, drills, strides
                2400m - alternating 400m hard, 400m steady pace
                2400m - alternating 200m hard, 200m steady pace
                cool down, stretch
Thursday - 8 miles in the rain (Mountain View)
Friday - 3 miles jogging in the rain (Baylands)
Saturday - 6 miles in the rain, 4 at marathon pace/effort (Steven's Creek)
Sunday - 18 dry miles! Yahoo! (Sawyer Camp Trail)

Garmin stats from Sunday are here.

How I felt running on Tuesday night!

And Thursday morning!

You never know what to expect, weather-wise, in Boston in April so I guess this week was good preparation.  And I've had a lot of opportunities to practice running in perfect California weather this winter, so I really can't complain.  
And I got to enjoy this on Sunday:

Sawyer Camp Trail

View from the trail, Crystal Springs Reservoir

Smiling because it's not raining!

 "If you smile when no one else is around, you really mean it."

~Andy Rooney

A contest!

I'm signed up for two running races in the next two months: the Jenny's Light 10K on March 6 and the Boston Marathon (obviously) on April 18.  And I have two FARA goodie bags for the blog readers who come the closest to guessing my finish time at each event!  The best guessers will each win a reusable FARA bag filled with a "SLOW, STOP, REVERSE" FARA wristband, some other miscellaneous items with FARA logos on them, and a homemade baked good (made by me, not FARA).  If you don't live within a reasonable delivery distance, I'll mail it you!

FARA tote filled with fabulous prizes

Since this blog is all about fundraising for good causes, I should mention that Jenny's Light is a fantastic non-profit founded by my coach and friend, BGL, to raise public awareness of perinatal mood disorders.  I want to get in another hard race effort before Boston and I always want to support Jenny's Light!

To enter your 10K time prediction, just leave a comment on this post before race day.  There are a lot of factors to consider when formulating your guess.  The 10K is new event this year (the 2009 and 2010 Jenny's Light races were only a 5K) so I don't have a previous time to benchmark against.  The course is relatively flat, but there are some tight turns.  And I won't really get to rest up for the 10K, it's more of a training event.  But I promise to do my best!  And I promise not to be offended by any slow predictions.  I have no expectations.  Take a guess!

Marathon training, week 6

Happy Valentine's Day!

From the WWF calender in my cube! (Stuart Westmord/Getty images)

I bounced back from the race last weekend thanks to an awesome/excruciating massage on Monday and ran 35 miles as follows:

Tuesday - 7 miles on the track with TRIbe
                 warm up, drills, stadiums, strides
                 1600m, 2 x 800m, 3 x 400m, descending pace with distance
                 cool down, core, stretch
Thursday - 8 miles on the roads (Mountain View) plus drills and strides
Friday - 4 cruisey miles on trails (Baylands) *see note below
Sunday - 16 miles - 4 miles solo + 12 miles with run buddy AGA (Lexington Reservoir)

Garmin data from Sunday is here.  If the Garmin displayed fun you'd see a big increase when AGA showed up at mile 4!

The training weekend in pictures is here:

Baylands Park, cruisey Friday jogging loop

Riding with TRIbe on Saturday

Sunday on Los Gatos Creek Trail

Fundraising update:
The anonymous donations are killing me!  In a good way! Thank you Anonymous 2!  Your generosity is truly appreciated by me, my family, and the FARA community.

Note: "Cruisey" is an awesome Aussie word I learned from Chris McCormack.  I hope there's some training benefit from using the same vocabulary as the Ironman World Champion!  I work hard on the track and during long runs, but make a conscious effort to keep some days cruisey.  To me, that means "easy, light, and fun".

Macca and me in 2008

Guest blogger Mama T

My mom and I might look a lot a like, but we're very different personalities.  Some of that is probably due to JPT's genetic influence and some to our different life experiences.  She wasn't as lucky as me to have a mom like her!  Friedreich's ataxia has always been a part of my family life.  But not for Mama T.  Her understanding of FA has changed a lot since she first met JPT.  

Wine tasting with Mama T, 2010

I met JPT in the fall of 1966 at Stanford University.  I was a freshman, just beginning my studies; he was a first-year grad student in physics.   As we were getting acquainted, he told me about himself and his family: grew up in Massachusetts, went to Princeton, was the oldest of four children.  He told me that his youngest sibling, Patti, was in high school and had a disease called Friedreich’s ataxia, a disease of the nervous system.  Other things I learned at that time: 1) that FA was named for someone in Austria who had the disease, 2) that FA was caused by a genetic mutation and so it was an accident without relevance for other family members, and 3) that Patti was unlikely to live to be as old as he was (then 22).

We were just getting acquainted at that time, not really establishing each other’s pedigrees.  All three pieces of information that I was given in 1966 turned out to be wrong, but JPT could only rely on the very limited understanding of FA that had been gained since it was described by, and named for, physician (not patient) Nikolaus Friedreich in the mid-19th century.  As noted in earlier entries in this blog, FA is actually caused by an inherited genetic defect.  And Patti Timbie lived to be 37 - well past 22.

Young love, 1968

The next milestone for me was March 1968 when I met Patti, who came to California with her parents for the wedding of JPT’s brother, RET.  We picked them up at the San Francisco airport and drove to Yosemite, the site of the wedding.  So there were 5 of us (plus a large vacuum cleaner that occupied one seat) riding together for hours.  I got to know her a bit: her strong opinions, her frustration with her disability.  She was a bridesmaid in the wedding, walking down the aisle with the help of her brother CNT, who was then 19.

Skating on the duck pond in Hamilton, 1979

JPT and I married in 1969, moved to DC in 1971, and saw Patti more often.  Looking back, I wish that we had visited more, either with her parents in Hamilton, MA or later in Boston at the Center for Independent Living (where she lived from the late 70’s on).  A typical visit with Patti in Boston might go like this: we go to her apartment on the Fenway and just “hang out” with her and perhaps some of her friends and health care aides in the apartment.  We might share a meal right there.  She could compose a message on a computer screen by selecting from a large-font display.  We could communicate back and forth with this device, after a fashion, even though her eyesight and speech were getting worse.  But saying good-bye at the end of the visit was always hard.  Patti might be in tears, saying good-bye, and then I would be, too.

CMT can't quite sit up yet, 1985

Yet in other ways FA was still remote for me.  Even though I knew an FA patient, I didn’t think it was a threat to my own family - JPT and I, plus AT and CMT, born in the 80’s.  My understanding had not changed much from 1966 to 1986.  But within the next ten years there would be a lot of progress, in diagnosis if not in treatment.  If JPT and I were meeting now as young people, he would know that he carries the gene for FA.  And I could have genetic testing also.

Marathon training (and some racing), week 5

I raced!

Or maybe I should say I participated in a race, since I'm not exactly in half marathon race shape yet!  But there's no better preparation for racing than racing, and I wanted to practice getting nervous the night before, agonizing over what to wear (what if it's hot? what if it's cold?), and talking myself through the low moments that come in every race (even the good ones!) when you start to hurt and you still have a long way to go.  Mission accomplished!

I took it a little easier this week leading into the race on Sunday:

Tuesday - 7 miles on the track with TRIbe

                warm up, drills, stadiums, strides

                4 x 1K with 200m log recovery

                cool down, core, stretch

Thursday - 7 miles on trails (Baylands) plus drills and strides

Saturday - 3 mile pre-race shake out plus strides 

Sunday - race!

Garmin data from the race is here.  This was my first time racing with a Garmin.  It was interesting to see the miles splits from my watch get farther and farther from the mile markers on the course.  I guess I don't run the tangents very well!  I ended up with 13.23 miles of total distance (vs. 13.1 miles on the certified course).  Not TOO much extra work.

Enjoying the sunshine post-race

Re-hydrating, 10am is a drinking hour on Superbowl Sunday!

The race course starts in Golden Gate Park, then does a loop in the Panhandle before running back through the park and down to the waterfront for an out-and-back stretch on the Great Highway and finally an uphill finish back in the park.  I ran a pretty even effort that resulted in some pretty uneven mile splits as the road went uphill and downhill.  I feel bad for mentioning this, because so many blog readers are struggling with nasty winter weather, but we had an absolutely gorgeous day in San Francisco!  It was probably 60 degrees at the start and close to 70 at the finish!  The out-and-back along the ocean on the Great Highway can be windy, and usually it's a brutal headwind on the way back.  On Sunday the breeze was actually refreshing because I was getting hot!  The last mile of the race turns off the Highway and climbs uphill to the finish line.  I was definitely struggling up the final hill, not so much because I was tired cardiovascularly, but because my legs were tired from holding a faster pace for 13 miles.  I have more work to do!

Since I don't have any race pictures yet, I'll leave you with one from my first visit to Golden Gate Park almost 30 years ago!

Tough hair day!



Ride Ataxia



Early bike training with mom

The Timbies like bikes!  And I know a fair amount of the blog readership also rides.  Both the east and west coast cyclists can help support FARA at a Ride Ataxia event this year. 

Ride Ataxia began in 2007 when founder Kyle Bryant decided to ride from San Diego to the National Ataxia Foundation Annual Meeting in Memphis, TN.  Kyle had been diagnosed with FA two years prior and his balance had deteriorated to the point that he didn't feel safe on his bike.  Rather than give up the freedom and the challenge of cycling, Kyle found a "trike" and had so much fun riding 2500 miles with friends and family that the rides haven't stopped!  In 2010 there were Ride Ataxia events in Texas, Florida, Pennsylvania, and California.   The 2011 Nor Cal ride is scheduled for Saturday, May 14 in Davis.  Maybe I'll see you there?

Riding my bike, Ironman Canada 2010

The east coast ride is held in October, but the 2011 date hasn't been announced yet.  The east coast Timbies have made a strong showing at Ride Ataxia, PA for the past two years.  Two of the three guys pictured below even rode some "bonus miles" in 2009 and almost ended up on the PA turnpike.



Timbie brothers in 2009

In 2010 JPT was on injured reserve, so Mama T rode to represent to D.C. Timbies.  Cousin J also rode while the rest of the PA Timbies manned an aid station.


Mama T on two wheels

How cute is my mom?  If you need even more inspiration, check out Kyle's FARA team that completed RAAM (a 3000 mile bike race across the U.S.) last summer!  Wow!