Cupcakes, Snowflakes and Heartbreak

February is a busy month for the Running For Rare Diseases team.  Our official “team matchmaker” Phil has been working hard to find the perfect pairing of runners with their patient partners.  All runners have been matched and our team roster is now complete.  I’ve been getting to know my patient partner Shauna and her family.  They are amazing and inspirational people.  February is also a busy month for team fundraisers.  The fundraising efforts of this year’s Boston Marathon team benefit the NIH Undiagnosed Diseases Program (UDP) through NORD.  Tara, one of our patient partners, recently wrote about how she was even a former Patient of the NIH UDP.  It’s a worthy cause, indeed.

Rena and Beth at their bake sale

I hosted a Valentine’s Day bake sale with two other members of the team from our Framingham site.  It was a great opportunity to talk about our team’s mission, hear stories from others who’ve run the marathon and share information about Rare Disease Day.  It was a successful day and we raised a lot of money for NORD.  In addition to the bake sales we’ve had a karaoke night, a chocolate roses sale and a pub fundraiser with live music.  There will also be bowling night and many events in conjunction with Rare Disease Day on February 28th including a torch relay from Framingham to Boston and speakers who are living with a rare disease or are caretakers.

Beth’s daughter making cupcakes for the bake sale

I also had the opportunity recently to do my first training run on the Boston Marathon course with some members of the rare diseases team.  I wasn’t sure how I’d feel about being on the course for the first time.  Would they know I wasn’t a “real runner” and before last year I’d never done more than a neighborhood 5K?  Would there be reminders everywhere of the tragic events of last year’s marathon?  And what about this Heartbreak Hill I’ve heard so much about, the half-mile incline 21 miles into the course commonly referred to as the “wall” of the marathon?

It’s been especially cold and snowy in the New England area, which has added an extra level of challenge to our training.  My run on the Boston course came on a rare warm sunny day.  It was a 12 mile run that looped around a 4 mile section of the marathon route in the town of Newton.  Another member of the team pointed out landmarks along the way including the Johnny Kelley statue and the infamous Heartbreak Hill.  I also ran past Boston College and the church there where some special people in my life were married.  I was amazed at how many people were out running.  I thought it would be a very solitary experience but the streets were packed with runners of all abilities.  I was definitely not the only “runner with a lower case r” as many were clearly training for their first marathon.  Heartbreak Hill didn’t seem as challenging as I expected it to be compared to the hills I’m used to running in my hometown.  I’ll probably feel differently about it after 21 miles of running though!

There were some reminders of what happened last year.  The fire station on the route in Newton is still decked out in a blue and yellow “Boston Strong” banner.  There were many people wearing the 2013 marathon jacket.  Overall it wasn’t as sad and hard as I thought it would be, although I had to choke back tears a few times.  If anything it made me so proud of our city and especially our public safety community and I could not be in better hands for this year’s marathon.  My first run on the course will always be a special memory for me.

The theme for this year’s Boston Marathon is “We Run Together”.  I can’t imagine a more fitting motto for our team and our city.  Whether fundraising, doing training runs, or raising awareness for rare diseases there are many ways our team “runs together”.  For more information about the history of the Boston Marathon, check out Jessi’s post from last year and the interactive course map from the Boston Globe.