February is a busy month for the Running For Rare Diseases team.Â Our official “team matchmaker” Phil hasÂ been working hard to findÂ the perfectÂ pairing of runners with their patient partners.Â All runners have been matched and our team roster is now complete.Â I’ve been getting to know my patient partner Shauna and her family.Â They are amazing and inspirational people.Â February is also a busy month for team fundraisers.Â The fundraising efforts ofÂ this year’sÂ Boston Marathon teamÂ benefit the NIH Undiagnosed Diseases Program (UDP) through NORD.Â Tara, one of our patient partners, recently wrote about how she was even a former Patient of the NIH UDP.Â It’s a worthy cause, indeed.
I hosted a Valentine’s Day bake sale with two other members of the team from our Framingham site.Â It was a great opportunity toÂ talk aboutÂ our team’s mission, hear stories from others who’ve run the marathon and share information about Rare Disease Day.Â It was a successful day and we raised a lot of money for NORD.Â In addition to the bake sales we’ve had aÂ karaoke night, a chocolate rosesÂ sale andÂ a pub fundraiser with live music.Â There will also be bowlingÂ 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.
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.Â Â I wasn’t sure how I’d feel about being on the courseÂ for the first time.Â Would they know I wasn’t a “real runner” and before last year I’d never done more than a neighborhood 5K?Â Would there be reminders everywhere of the tragic events of last year’s marathon?Â And what about this Heartbreak Hill I’ve heard so much about, theÂ 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.Â Â My runÂ on the Boston course came on a rare warm sunny day.Â It wasÂ a 12 mile run that looped around a 4 mile section of the marathon route in theÂ town of Newton.Â Another member of the team pointed out landmarks along the way including the Johnny Kelley statue and the infamous Heartbreak Hill.Â I also ran past Boston College and the church there where some special people in myÂ life were married.Â Â I was amazed atÂ how many people were out running.Â I thought it would be a very solitary experience but the streets were packed with runners of all abilities.Â I was definitely not the only “runner with a lower case r” as many were clearly training for their first marathon.Â Heartbreak Hill didn’t seemÂ as challenging as I expected it to beÂ comparedÂ to the hills I’m used to running in my hometown.Â Â I’ll probably feel differently about it after 21 miles of running though!
There were some reminders of what happened last year.Â The fire station on the route in Newton is still decked out in a blue and yellow “Boston Strong” banner.Â There were many people wearing the 2013 marathon jacket.Â Overall it wasn’t asÂ sad and hard as I thought it would be, although I had to choke back tears a few times.Â If anything it made me so proud of our city andÂ especially our public safety community and I could not be in better hands for this year’s marathon.Â My first run on the course willÂ always be a special memory for me.
The theme for this year’s Boston Marathon is “We Run Together”.Â I can’t imagine a more fitting motto for our team and our city.Â WhetherÂ fundraising,Â doing training runs, or raising awareness for rare diseases there are many ways our team “runs together”.Â For more information about the history of the Boston Marathon, check out Jessi’sÂ post from last year and the interactive course map from the Boston Globe.
Hi Beth! Enjoyed reading your post! It was such fun putting together the bake sale and running with you! Keep up the great work!!!!
Thank you, Rena! I couldn’t have done it without you!
Anyone who trains for a MARATHON is a capital R Runner! You included. I find it inspiring to hear about your first Boston Marathon journey. It’s going to be an awesome experience for you I’m sure! Good luck & keep the updates coming.
Thank you, Emma. I think you’re pretty inspirational too :-). I’m really motivated to show my children and my patient partner Shauna that if they work hard they can achieve big things! I’m usually the slowest runner on the team and the last one to finish our training runs, but this year more than ever it’s a victory just to make it across that finish line.
I get a running quote everyday in my inbox (often a bit cheesy) but I like the one that arrived today and I thought I’d share it with you Beth:
“To know you are one with what you are doing, to know that you are a complete athlete, begins with believing you are a runner.”
It’s perfect. Thank you, Emma!
I loved this post! Running the marathon course is such a special experience, and all the more so this year. It’s an experience that really exemplifies the theme “We Run Together,” as you point out. This morning I took the commuter rail out to Natick and some other runners were getting off at the same stop. One of them grinned at me and said, “16 miles all the way in! Let’s do this!” She knew exactly the route I was running without having to ask. I forgot to bring water with me but the amazing volunteers at other charities’ water stops were happy to help out, and there were even some high schoolers out there handing out water with no visible affiliation to any charity; I think they were there just to support any and every Boston Marathoner. Not to mention all the drivers who kindly changed lanes to avoid driving too close to us when the shoulder on the road was too narrow due to snow drifts. The entire city (cities!) really is coming together to support this marathon.
Thanks also for linking to my blog post from last year. 🙂 Appreciate it!
Thank you for sending us your post this week Jessi, it was a great read! It was so amazing to see the history of the marathon come to life. I could have written so much more. And I love the implied understanding between runners. Just a smile or a nod or a wave communicates so much. I’m running a local 20-miler in a few weeks so I did the last 15 miles of that route today. Same snow bank problem. I felt like I had a sign on my back that said “Be nice to me, I’m training for Boston”.