Final thoughts and THANK YOU!

I've never gone into a big event without a race plan and some sort of performance expectations.  And without those things to measure against, it's a little hard to know what to say when it's over except, it's over!  And I said that on Monday.  But now I have some pictures!

Friday night reunion

The chance to visit CMT was the main reason I first ran Boston in 2010.  And once again, she was an awesome marathon hostess, sherpa-ing me around town and tagging along on all my pre-race errands.  Thank you!

Packet pick up on Saturday

A highlight of race day was the chance to catch up with SF buddy Les on the long, slow school bus ride to Hopkinson.  It had been way too long since we'd had a good girl-talk.

BCC 4eva!

In 2010, my family braved the crowds on the T to get out to mile 17, saw all my friends run by, and somehow missed me.  If I had a race goal this year, it was to wave to my super crew and get one in return.

Success!

The finish line is always a happy sight and it's always better share it with friends and family.

It's always breezy in Boston!

Thank You's!

I have a lot of people to thank for all their efforts on the way to Patriot's Day!

Thank you Jamie Young, Marilyn Downing, and Jen Farmer for welcoming me to Team FARA and for all your support and encouragement.  And thank you for the work you do at FARA every day!

Thank you to everyone who stopped by to read this blog, shared it with a friend, or offered some feedback.  Two readers deserve a special mention:

Thank you blog guru KET for your early embrace of this project and for leaving sweet, supportive comments on nearly every single post I wrote!  I can't properly express how much it's meant to me!

KET is always there for me.

And thank you JPS (who probably never dreamed she'd make so many photo appearances on my running blog!) for all the kind words, thoughtful emails, and positive energy.  There is no one quite like your old friends!

In Karlstadt with JP-almost-S

Thank you to everyone who made a contribution to FARA!  The generosity of friends, family, and total strangers has been amazing and inspiring.  I hope that by sharing some of my family story over the last few months, you feel connected to the valuable, life-changing work FARA can do with your support.

CNT, Garrett, and Cousin J, 1982

Thank you to all the Timbies for reading, guest blogging, and enduring lots and lots embarrassing old photos.  With special thanks to CNT, Aunt C, Cousin J, and Garrett, for sharing your memories and pictures with me.  And the blogosphere!

JPT rockin 80's shades

Smooch!

And special thanks to my Timbies, CMT, JPT and Mama T, who in typical fashion went totaly above and beyond all reasonable expectations to help me raise some money for a cause that's important to all of us and follow some advice from a good book that was passed around our house.

Don’t let yourself be. Find something new to try, something to change. Count how often it succeeds and how often it doesn’t. Write about it.
~Atul Gawande

Run done!

Well, I made it from here:

to here:

Which is more than I expected 2 weeks ago!   

It wasn't my fastest marathon, or my fastest Boston Marathon.  In fact, it was slower than my last two Ironman marathons!  But today's jogging tour of Massachusetts was not about time goals.  I went with the popular vote and didn't even wear a watch!  You hear a lot of people say that running in Boston is the victory lap after qualifying.  For me, it was the end note to raising awareness for Friedreich's ataxia and upwards of $4,000 for FARA.

More postmortem analysis, and some much deserved thank you's, to follow later this week.

Sunnyvale to Boston!

My coworkers surprised me and another marathoner office-mate with good luck goodie bags and Boston Creme pies!  Which apparently are hard to find in Sunnyvale and required multiple phone calls to bakeries.  Thank so much for all your efforts WLG SV!  I was VERY surprised.  In my career experience, short-notice all-company meetings mean BAD NEWS.  Like "our start-up has run out of money and you're all out of a job" type bad news.  I walked into our conference room expecting the worst and found pie!

Apparently Boston Baked Beans are also available in CA.

I've never felt less prepared for a big race, but at least I'll be well fueled!  

A thoughtful and timely comment on Monday's post reminded me that this race, and this blog, are not all about me.  They're just opportunities to do something positive for my family and the FARA community.  And I'm more than happy with the progress I've made there.

Early spectating practice in Carmel

And I don't have to worry about the marathon until Monday!  Right now I'm just looking forward to reuniting with CMT.  She's spent her whole life watching me both succeed and fail, and probably doesn't much care how fast I run.  Unless it's raining and she's stuck waiting at the finish line.  I don't mind if you wait at Dunkin' Donuts!

Maybe Monday will go more like this!

And now it's SFO to BOS!  See you on the flip side, blog readers.

K.C.C.O

 
That's my motto for the week.  It feels like forever since I've done any real marathon training!  And I have no idea what kind of residual fitness I'll have left for next Monday.

CMT and I have a matching set

I'm considering breaking my "no jewelry while training or racing because it's icky" rule and wearing my KCCO necklace in Boston. Because I need all the help I can get.  I'm also considering doing the unthinkable - running without a watch!  My time goals went out the window with my leg-meltdown a few weeks ago.  My only goal now is to run from the start to the finish and appreciate the opportunity to do so.  Plus the idea of "going watchless" scares me, so I suppose that's all the more reason to do it!

Crunch!

I'm not the only one in my household feeling banged up.  My poor car took a beating last week, too.  And he might have to spend a few more weeks with that ugly dent, because I have some travel plans coming up!

Odds and ends

Mama T doing all the hard work

There aren't many blog weeks left and there are still a few things I'd like to mention.  And in digging through a lot of old family photos for this fundraiser, I found A LOT of pictures of canoes.  I guess that's because we spent a lot of family time paddling around the east coast of the U.S. and Canada over the years.  This is my chance to use some of those up, too.

Registration for Ride Ataxia Northern California is open!  And the price goes up on April 14, so if you like to ride bikes and support the search for a cure for Friedreich's ataxia, here's a chance to do both on a Saturday morning!  Registration and more info are here.


JPT in his element

Kyle Bryant is the founder and director of Ride Ataxia.  He's also the name sake of the Kyle Bryant Translation Research Grant.  Through fundraisers like Ride Ataxia (and this one!) FARA has provided more than $10 million in research funding to scientists at public and private organizations.  In the beginning, funding priorities were focused on basic research to understand the cause of FA and the pathophysiology of the disease.  While there is still more to learn about the mechanism of FA, great progress has been made on this front and the focus has shifted to translational and clinical research. Translational research seeks to take a concept from the lab and develop it into a tangible treatment for FA patients.

CMT was awarded a research grant too! For brains, not FA.

As we enter the homestretch, Sunnyvale to Boston has raised $3507!  If you're still inclined to make a donation and, like me, you sometimes need multiple reminders to get something done, you still have 10 days left.  I don't know how long my page will be active after race day.  But FARA will continue their hard work until there is a cure for FA, and I know many readers will continue to support them for years to come.  Me too!

Cruising with CMT in Novia Scotia

Blog reader Megan left a comment on my post last Friday. 

"What made you get tested?"

Good question!  Certainly no one made me.  I was 18, so medical decisions were my own to make, and I didn't feel pressured by my parents in any way.  And it certainly never occurred to me that I might have FA because both Patti and Garrett's symptoms began in childhood.  Now I know that late onset FA can occur at any time in adulthood.  Kyle's symptoms didn't become significant until he was a teenager.  I think the opportunity to get tested came at a time in my life when I was living on my own for the first time, and learning a lot about myself, and this was just another piece of information I wanted to have.


Have fun carrying all this gear Mama T!

Recovery Update

Sunshine! Rainbows!

I added some sunshine and rainbows above, because I don't have any report.  After a week of less running and more swimming and yoga, I am feeling a little better, but certainly not fresh and ready to run a marathon.  So the recovery project continues.

I got some good advice from a good friend to "keep smiling"

 

My mom makes me smile

When a German tells you to smile you should probably listen!

What I'm made of

There have been several blog references to genetic testing for Friedreich's ataxia.  I was tested at the end of 1998, over winter break during my freshman year of college. 

Fall quarter 1998, go Cardinal!

My test was analyzed at the Genetic Diagnostic Lab at the University of Pennsylvania Med School.  They sent me a sample collection kit and I brought it to my local Kaiser lab to have the blood drawn.  I don't have any problem with other peoples' blood and guts, but I don't much like to see my own.  So tried not to watch as they filled the necessary vials and vials and vials of blood.  Then the nurse put my blood in a baggie and gave it back to me to walk out the door, which felt a little odd.  My DNA went off to Philadelphia, and I went back to California, and the results came in the mail in January.

In some ways, the genetics of FA are simple as Mendel's pea plants from my 8th grade biology class.  The gene for FA is recessive and the child of two carriers has a 25% chance of inheriting the disease.

The genetic marker for FA, and the results of the genetic testing, are a little more complicated.  Our genetic code is written on the double helix of our DNA by triplet combinations of four nucleotides labeled A, T, C, and G.  Only a few repetitions of the nucleotides GAA are found at a specific place in the FA gene of a person who does not have the disease.  However, in a FA patient, this combination of GAA nucleotides is repeated hundreds, or even thousands, of times, making it very difficult for the code on the normal part of the gene to be read and thus limiting the amount of Frataxin protein that can be made by the body.

The FA test results report two numbers that equal the number of GAA repeats on the FA gene. One number is from the allele, or gene, inherited from one parent (Mama T) and the other number is from the allele inherited from the other parent (JPT). A number of GAA triplet repeats greater than ~120 confirms the inheritance of Friedreich's ataxia.  Research is underway now to understand the correlation between some FA symptoms and the number of GAA repeats.
 
My GAA repeat stats:

Allele 1 = 7
Allele 2 = 22

Science says I'm normal!


So I can blame all the weird stuff on my crazy friends!