Welcome!

Thanks for checking out my blog! I've decided to run 12 races in 2012 to raise money for Diamond Blackfan Anemia (DBA) research and to promote the bone marrow registry.

DBA is a very rare bone marrow disorder. People with DBA produce very little or no red blood cells. DBA patients are typically diagnosed within their first year of life. The majority of DBA patients require transfusions or corticosteroid medication. Some have bone marrow/ stem cell transplants.

My sister, Lizzie, was diagnosed at 6 weeks old and it is for her that I run.

Friday, December 28, 2012

12 in 12 ... check!

And with wind in my face, several hills behind me and my husband by my side I crossed the finish line of run number 12. It took me just over 27 minutes to finish the 5K. The last race being the most relaxed of all the races we were handed a Popsicle stick with a number on it which would correspond with our time. I was number 32 and well near the back. Never had I PR'ed in a race and also nearly finished last. This was a quick group! But, it wasn't about the time or the placement but about finishing what I set out to do. 

I finished 12 runs, raised $970 to date and hopefully inspired others to donate blood and blood products and register to donate bone marrow. I will go into 2013 both proud of my accomplishments and driven to do more. 

But before I look ahead to the next adventure- I want to  thank everyone who helped me with this year's endeavor. First for everyone's encouragement, support, the Facebook messages and likes and for sharing my blog! Also, for all my friends who ran with me through out the year. And of course for the many generous donations. I know it is said a lot, "any amount helps!" ... but with a disease as rare as DBA and a foundation as small as DBAF truer words have never been spoken. So a huge thank you to all my donors and their generosity. 

And perhaps the biggest thank you of all goes out to my husband, Mike. A big thanks for racing with me, for taking pictures of me after the races, for cheering me on from the sidelines, for driving me to races and picking me up (sometimes with chilled chocolate milk!), for begrudgingly taking me to Dunkin Donuts for what has now become my obligatory post race coffee and egg white turkey sausage flat bread and for always keeping me going.  :) 

That wraps up my 12 in 12. But don't be surprised if I have more exciting adventures planned for 2013!

Happy New Year to all and God bless!



donate: http://dbafoundation.org/donate/ mention Lizzie or Amy in the purpose. 

Friday, December 21, 2012

Almost there!

Just one run left- one that I will finish tomorrow. In the 32 degree weather that December in Massachusetts promises, I will lace my up shoes one last time in the quest to run 12 runs in 2012 to raise money for DBA.  This has been an interesting journey spread out over many months- some that I ran a lot of races some that I ran none. Some runs were empowering and fun others were tough. In most of the longer runs it hit me- the reason I run. In all runs at least once when I thought I can’t possible run any further, faster, longer, stronger I gained inspiration from Lizzie and the things she’s done. I reminded myself- if she can be so strong for the last 18 years I can go strong for these last 18 minutes. It’s been a labor of love and dedication.

I wonder how I’ll feel when I finish running. When I complete a task I set out to do 12 short months ago. I hope I’ll feel proud of the runs I did- and even prouder of the funds I’ve raised. I hope I’ll feel accomplished yet unfinished- because until there is a cure for DBA the work is never done.  I’m sure I’ll start thinking of the next thing I can do to raise more money. The next way to get people to understand the dire need for blood and blood products. The next idea to spread awareness of how important you  can be to someone else by registering to donate bone marrow- and more importantly by actually donating if you are ever called.

So until then, until tomorrow hopefully a few minutes before 9:30 a.m. EST (let’s shoot for PR!), I look forward to being near the end of this journey.. and near the beginning of another.

Like Steve Jobs said so very eloquently, “stay hungry, stay foolish.” And that’s what I plan to do.


(to donate visit: http://dbafoundation.org/donate/ mention Amy or Lizzie in the purpose)

Sunday, November 4, 2012

Back at it!... and Lizzie Bell news

12 runs in 12 months...or 6 runs in two! Oops! It's safe to say that procrastinating has gotten the best of me yet again! So as we go into the final two months of the year I have the following runs to complete:

Hot Chocolate 15K (11/4/12) - DONE
Perfect 10 10 miler (11/10/12)
Lincolnwood Turkey Trot  8K (11/18/12)
Rudolph Ramble 8K (12/9/12)
Jingle Bell Run 10K (12/15/12)
Central Mass Striders 5K (12/22/12)

A lot of running, a lot of early mornings and a lot of dedication. But for one very good cause and one special and especially weird sister!! :) In total I will run approximately 86.4 miles to raise money for Diamond Blackfan Anemia! My first run back went much better than I anticipated, especially considering I haven't really been running since my last race. Glad to know I still got it ;)
Run #7!!

The big draw for the Hot Chocolate 5K/15K  is the post run finishers mug- filled with chocolate fondue, hot chocolate, rice krispy treats, marshmallows, banana and apples. It was definitely a good finish to 9.3 miles of running. Below are pictures of Mike and I post run!


Lizzie Bell News:  As I mentioned in my first blog post, Lizzie only has about 10% functioning bone marrow. At her last appointment in July we found out a few things. 1- Lizzie only has between 5-10% functioning bone marrow and 2- we have a tentative bone marrow match.  With that information, we are taking steps to prepare for a bone marrow transplant scheduled tentatively for July. Now, there are still a lot of factors to consider. The donor agreeing to donate - and still being able to. The donor being a match for Lizzie upon further testing. Lizzie's iron levels going low enough to transplant safely etc. I will be sure to keep everyone posted as we know more- which we should when she has her next appointments in December. But, until then- as always- please be sure to keep her, her donor and her doctors in your thoughts and prayers so we can move onto this next journey as safely and prepared as possible.

And lastly, of course, please donate to DBA research to keep funding a cure and better treatment! Thank you everyone for your support so far! http://www.dbafoundation.org/donate.php (don't forget to mention Amy or Lizzie in the purpose)

Sunday, July 29, 2012

5k.. or triple threat?

I'm half way there!! Big thanks to everyone's encouragement, donations and friendly probing "um, its July.. how many races do you have left??" Thursday I ran the Run for Gus 5K. I know what you are thinking just a 5K? Anyone can run twelve 5Ks in a year. Going into this I said I really didn't want to do any 5Ks, but once I heard more about this race I decided it should count, and I think you'll agree.

After the race (time: 30:54)

So why do these 3.1 miles count? Because this was a triple threat. In running these 3.1 miles I added to my fundraising for DBA, donated money to Lurie Children's Hospital and helped the Beads of Courage program. BAM three amazing causes in one quick run.

I think what sold me most on this run was the Beads of Courage aspect. For those of you who are not with the program, Beads of Courage helps children with illnesses record, tell and own theirs stories by collecting beads. We'll use Lizzie as an example- with the Beads of Courage program every time she gets a transfusion she gets a red bead, every time she spends the night in the hospital she gets a different color bead. As I'm sure you can imagine after the last 18 years Lizzie has quite the bead collection.. as she says she literally has BOXES of beads. With the Run for Gus 5K participants had the option to pay an extra $15 to join Team Beads of Courage. With that you get two beads. One you keep. The other you run with then leave with a note of encouragement to go to one of the thousands of children fighting any number of diseases. What a phenomenal concept! I had to do it.

Me and my bead
The hardest part of this race was deciding what to write to a child who would be receiving this bead. How could I encourage and inspire them? My 3.1 miles paled in comparison to their daily struggles. I'd like to share that I had a moment of clarity and passed along wisdom and courage in an eloquent way that would make Ralph Waldo Emerson proud. But, alas, I did not... but surprisingly my number driven engineer husband shocked me with his thoughtful and poignant message that simply stated "I started this bead's journey, now you can finish it! Thinking of you as I run."





6 more runs to go, many more miles to cover, driven by 1 ever present goal.

(donate here: http://www.dbafoundation.org/donate.php mention Lizzie or Amy in the purpose)


Saturday, July 21, 2012

Soldier On


I completed runs 4 & 5… then promptly forgot to write about them! I’m sure you all keep checking back to my blog weekly wondering how I plan to complete all these runs if I’ve been sitting around. So, without further delay let me share with you runs 4 & 5- or the Soldier Field 10 Miler and the 13.1 Chicago Half Marathon.

Solider Field 10 Miler- The draw with this race is that runners get to finish on the 50 yard line of Solider Field!  The forecast leading up to the race was a little nerve racking promising for a lot of heat and humidity. Strangely enough- the day of the race as actually quite cool. We were even nervous about thunderstorms stopping the race for a bit.  The run in itself was fairly uneventful and nice. I had a good pace going and if I hadn’t had to stop and use a port-o-potty I would have been more pleased with my time (1:47 but I’d like to think it was closer to 1:45). It was exciting to cross the finish line in the middle of solider field. It was also cool to hear what some other runners did… including spiking a mini football. And most notably pulling out a Packers flag for the last few yards! In all good run, good day!
 



13.1 Chicago Half- this was another race that promised to be warm – and this time it delivered. This may have been the hottest run I have ever done and the first time I ever had to stop and walk because I felt dizzy. It started off great and I was making good time but around the half way mark the sun, the heat and the humidity started to get to me. I kept trucking on in hopes of keeping on pace. Unfortunately, that didn’t happen. Around mile 9 I started to feel really weak and a bit dizzy. Noticing the many runners doubled over, vomiting and being helped by paramedics I decided that it wouldn’t be a good day to push it so I slowed significantly and even walked for small parts. It was definitely disappointing to not run the whole thing but I told myself that I was raising money to help save lives... I didn’t need to put my own in danger. I did manage to run the last mile without incident and finished strong. My time wasn't great at all- but considering the circumstances- I’ll take it. (2:30) 
 



Now I have done 5 runs and have 7 more! Thank you to everyone who has donated so far and supported my efforts!

Donate here: http://www.dbafoundation.org/donate.php mention Amy or Lizzie in the purpose. 

Friday, June 8, 2012

The Little Girl Who Did Not Make Her Own Red Blood Cells


* I asked my family to contribute to my blog and write out a story about Lizzie, their thoughts on our DBA journey, what your donation means to them and more. I will post the thoughts of my guest bloggers throughout my 12 in 12!


Guest Blogger 1- Kathy Bell aka Kbella aka my mom.  Wine enthusiast, Trader Joes advocate and a woman of many talents (sans cooking). My mom has been entrenched in the hospital world for the last 18 years. She can often be found sleeping on  cots or hospital couch beds, eating cafeteria food and rattling off lists of drugs, numbers and figures that would make the normal person dizzy. DBA and what it brings with it have become a fabric of life. And never one to live in a world and not try to make it better, she has become a voice for more blood and bone marrow donations as well as a provider of the little things that keep families going with the work of our families foundation and Team Lizzie Bell. It's not easy to figure out the ins and outs of a child with a life threatening illness while making such a difference but she manages to do with grace, fortitude and determination. 






Lizzie Journey: (written by Kathy Bell)
When she was small enough for me to still hold her - say- age 1 (Alicia not born yet) I remember entering University Medical Center and walking through the main lobby.  The thought came to my mind, what if this Diamond Blackfan Anemia thing takes a long time to resolve, what if we are doing this a long time.... (again, I was walking and thinking.... hard to  believe I was doing these two things at once) but I looked around at the people in the lobby - one older man stood out, he was sitting on the couches his skin was sun leather kissed and he looked tired.... there were different cultures in the area - Native American, Black, Hispanic, more....
I thought, well if this is where we are going to live, I am going to fluff the pillows and meet my neighbors.
That is how Lizzie and I became a face around the hospital, we would go to a different department handling her medical care and introduce ourselves, thank them for helping us and then move on.  It was either that or read MORE People Magazine and I was not going to sit around all day long, three days a week while waiting for test results or lab counts to come in... just could not waste time sitting any longer... so we would go visit people :-)
Favorites?  

  • The kitchen staff who made the 'mashy pe-ta-toes' and BROWN gravy
  • the nurses in the blood bank
  • Uncle Ruben and Tio Tony in Phlebotomy - Lizzie would train the new staff in how to 'stick' a toddler to get blood.... "rub the cottons three times real good...."
  • The gift shop! 

Meeting our neighbors and fluffing a few pillows is how folks first got to know the little girl who did not make her own red blood cells. 






(to donate visit: http://www.dbafoundation.org/donate.php and mention Amy or Lizzie in the purpose) 

Wednesday, May 30, 2012

Cinco= Dos and the Corporate Challenge

Cinco = Dos 
No, I am not (just) bad at math cinco DOES equal dos.. that is the Cinco de Miler was my 2nd race in my 12 races in '12 challenge! On May 6 I ran 5 miles with thousands of other Chicagoans... who I assume, given the date, were hung over. I am happy to say I was not one of them- having only indulged in one margarita the previous day. This was a bit easier than the first run especially since it was a whole 8 miles less! But it was exciting and fun just the same. Some highlights from this race were:
  • Mariachis at the start line
  • Churros at the finish 
  • Pinatas shaped like cans of Modelo
  • Note the Model Pinata in the back!
  • And ALMOST doing a sub 10 min mile pace  (I finished in 50:19 )










Corporate Challenge
On May 24 my esteemed colleagues and I took on the Chase Corporate Challenge! This race is where corporations in Chicago bring out their best and take on the streets. Naturally we not only had the best looking but fastest team out there ;) This races was only 3.5 miles but was still a bit of a challenge as the first 1.5 miles were spent dodging runners or avoiding being hit by other runners who were dodging people in a more aggressive fashion. 
LLS Corporate Challenge Crew!


Both runs were exciting and fun and helped me get closer to my goal of doing 12 races this year... and now you can help me get to my ultimate goal of raising funds for DBA research! Every dollar counts! To donate please go here: http://www.dbafoundation.org/donate.php and mention my name or Lizzie's name  in the purpose to make sure it goes towards my goal. 

A big thank you to everyone who has donated so far- to date I've raised $500!




Saturday, April 7, 2012

Run One Done!

As I am sure you have guessed I take on this fundraising mission with passion, conviction and determination.. my first race, however, was approached with just a little less gusto.  It probably didn’t help that my husband, Mike, and I signed up for it after enjoying a 3(+) beer lunch on an unseasonably warm Saturday in March.  Sure, we hadn’t run more than 5 miles since November but we were feeling so awesome we were positive our marathon training from 5 (five!!) months prior would carry us through. After we signed up we made a training plan and then spent the next four weeks ignoring it. Never to be one to leave a friend in a bind, my best friend Annie decided to sign up the Wednesday before the race stating “friends don’t let friends fail alone.”

And so, my friends, that is how Mike, Annie and I came to run the Chi Town Half Marathon on April 1. The longest run between the three of us was almost 9 miles.. once. Our average “training run” was somewhere closer to 3 miles.  As we toed that starting line, the phrases “we’re idiots” “this is going to hurt tomorrow” and “I hope I don’t die” were thrown around.

I’m not going to lie. It was rough. There were a lot of mental games I had to play to get through.  “Ok, just two more miles and you get a GU! You like GU!” I’d say to myself. Or “you are doing this for fun, so enjoy it …dammit” and one I’m nearly ashamed to admit “should my facebook say this.. or this if I finish”  And that is what we did. FINISH!  Mike and Annie both set PRs* (Mike was 30 seconds away from a sub 2 hour half) and I cut nearly 15 minutes off of my previous half time.  It’s safe to say we were all rather shocked and quite impressed by the end. Take a look at our beaming faces below.



Moving forward I’m planning to train more since, as they say, lightening doesn’t strike the same place twice. And to assume I can finish every half without training would be pretty dumb. And now that the PR bar has been set for the year.. I just have to get a PR myself!

1 race down… 11 to go! Thanks for joining me on this journey :)

* PR = personal record

Donate here:  http://www.dbafoundation.org/donate.php (Please mention Amy or Lizzie in purpose)

Monday, April 2, 2012

And so it starts...

As most of you know I have spent my career fundraising for very important causes. I love what I do. I love who I work with and I love the missions I support. But, as worthy as they may be none of them directly impact the reason I got into this field in the first place, my sister Lizzie. It is for that reason I am embarking on 12 races in 2012 to raise funds for Diamond Blackfan Anemia (DBA) research and promote the bone marrow registry.

The facts are these- Lizzie has 10% working bone marrow.  Lizzie continues to develop antibodies from her years of being transfusion dependent. These antibodies decrease the pool of blood donors available to her. Lizzie does NOT have a bone marrow match. Lizzie is half Mexican, half German which makes it harder to find a match. Lizzie needs a match or a cure. WE NEED YOUR HELP.

Now, I don't want to scare anyone. We aren't frantic and we continue to monitor Lizzie and keep a close eye on everything. She is currently doing well. But we would be remiss to not plan for the future and make sure that we are doing everything we can to be prepared for anything. More than that, thousands of other people would benefit from furthering DBA and marrow failure research and hundreds of thousands of people will benefit from adding new donors to the bone marrow registry. 

Please check back frequently as I update you on my  12 races in 2012 (half marathons, 10Ks, 5Ks, maybe another marathon), share stories about Lizzie, talk about ways you can get involved and show that with every step and every mile I plan to literally run for her life. 

Join me, donate money, donate blood and/or sign up be a bone marrow donor. Together we can be the difference. 

donate here: http://www.dbafoundation.org/donate.php (please mention Lizzie or Amy in the purpose)