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RFRD

Well, by now you all know that aliens have invaded my body and are making me run the Boston Marathon. 🙂 Ok, ok, I signed up for this myself – I just couldn’t resist being an official member of the Running for Rare Diseases Marathon Team! The team has had my heart and soul for years, and now it has my (aching, out of shape) body, too! What it also now has is me writing more blogs on http://running4rare.org than here (Like the blog about my Snow Run). So I am hoping you will all go to the site and sign up for the e-mail alerts so you can read posts from me and other runners, as well as posts from our patient partners, as we all make our way through this marathon training season. It would also be great if you could…

And of course, if you’d like to donate, that would be much appreciated, too! All funds donated to my fundraising page go directly to the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP).

Hey – want  a chance to WIN something for your donation??? Enter my raffle to win dinner for 10 ($1,500-2,000 value) catered to your specifications! Here are all the details:

Dinner for 10 Raffle to benefit the NORD/Genzyme NIH Undiagnosed Fund

¨ Catered dinner for 10 people at your home! (Must be within 20 miles of Boston – if you don’t live within 20 miles of the city and you win, you can have it at my place – seriously! So don’t let this stop you from entering!)

¨ Menu & date to be agreed with Chef Paul Spillane of Ne Me Quitte Pas Catering

¨ Value $1,500 – $2,000: all food, glassware, dinnerware, silverware, servingware, linens, etc., included, except alcohol

¨ Custom menu cards for each place setting as well bar cards, miniature boxes, etc.

¨ Dinner must be booked within one year of winning the raffle

“In the last few years we’ve become known for our five- to seven-course small-plate chef’s tastings as well as our miniature passed hors d’oeuvres… fully personalized mini-boxes fit in the palm of your hand. They include everything from French fry boxes, to lobster roll boxes, to take-out boxes and burger boxes and more. Since we design, print, cut and mold all the boxes ourselves they can be entirely personalized to the client and the evening.”  – Chef Paul Spillane, Ne Me Quitte Pas Catering

1 Ticket for $10; 3 Tickets for $20; 10 Tickets for $50

Winner to be Drawn and Notified: March 28, 2015 (After we run the Charity Run – our longest training run!) 

 You can buy your ticket easily by going to my fundraising page, donating the amount for the number of entries you want, and putting “Dinner Raffle” in the comments. I will then notify you with your ticket numbers – if you don’t think I have your contact information, please email it to me at altatwood@gmail.com. Otherwise I won’t be able to contact you if you win! Good luck! 🙂  And please pass this along to any friends who may want to enter and support us at the same time! Thank you!

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I can’t believe it’s been so long since I last posted here! Well, I think I’ve found something to write about…

With fellow Running for Rare Diseases Board Members (Jessi, Kai, Phil, me and Andrew; Not pictured - Shay and Marissa) after all - except me - finished the Boston Marathon...

With fellow Running for Rare Diseases Board Members (Jessi, Kai, Phil, me and Andrew; missing: Shay and Marissa) after all – except me – finished the 2014 Boston Marathon…

Dear family and friends,

As some of you may have known I would do long before I consciously considered it, I have decided to officially join the Running for Rare Diseases Marathon Team as a runner in the 2015 Boston Marathon. (You should see my face every time I say or think those words – scrunched up in a combination of terror and excitement, with butterflies in my stomach and sometimes tears in my eyes.)  Others may be as shocked as I still am at my decision.

Why am I doing this, you may wonder? I joke that I’m only doing this so I can buy one of those Boston Marathon jackets, but that’s not it. Ok, maybe a little bit… but if you have attended any of our Running for Rare Diseases Team events or read our blog, you know this isn’t really about running, even for a wicked cool jacket. Yes, I know I’m going to have to run (gulp) 26.2 miles on Marathon Monday and do the hundreds of miles of training in the next 100-plus days, but that’s just a formality. This is about people. Inspiring, strong, caring people. The people in the Running for Rare Diseases community. The rare disease patient partners and their families who live with challenges much more daunting, scary and personal than any sporting event, and who do so with the most positive, hopeful attitudes every day. And all the past team members – especially those who, like me, aren’t fast or born runners – who make this more like a family than a work team.

I want to continue throwing fundraisers for our NORD/Genzyme NIH Undiagnosed Diseases Program Fund and help those people out there who have been struggling for years without knowing what disease they have, and don’t even have enough money to have the initial testing done to get them into the program. I want to help them on that first step to finding an answer. And I want to get to know my own patient partner and his or her family. I want to follow the instructions on connecting that Shauna, a 10-year-old patient partner, gave us at our kick-off meeting: exchange lists of 10 things about you with your patient partner; make funny faces together; and get on the same level. Without question, I know this will be the highlight for me.

Yes, I, Amy Lee Tull Atwood, one of the LEAST athletic people ever, am running the 2015 Boston Marathon. I wonder how long it will be before those words roll off my tongue without cringing, and feeling slightly ill?

My friends Gail and Anne, both members of our Running for Rare Diseases community, asked me at the team kickoff meeting, “So are you running the half marathon?” I shook my head, scrunched up my face and whispered, “Nope. I’m running the whole thing.” They joined in my shock and excitement. I honestly don’t know when I crossed the line from “Never ever” to “How can I not?” I know that at the dinner on April 19, 2014, I was still strong in the denial I’d maintained since getting involved with the team in January 2011. I think it was just two days later at the Marathon that I cracked. There I realized that while I have done practically everything I can for this team as a Board Member, part of me still felt like a bit of a fraud or an outsider (even though Jessi said I am one of the cool kids and I was in some of the team pics). There were still things like team lists that screamed at me that I wasn’t really on the team. Most of all, while I actually felt lucky to get to know so many patient partners, I didn’t have one of my own. And this really hit home for me at Mile 14 when all the partners were holding signs for and eagerly awaiting their runner.

Some, like Tara, my parents and my teammate Beth, were nice and said, “Ok, but you don’t have to do it this year if you’re not ready.” Honestly, I feel like each year I have ramped up my commitment and this is the only next step. And I know that I will never really be ready. I’ll never have enough time and I’ll never be in well enough shape. I know in my gut that it has to be this year.

My mother also emphasized that I need to stop doing everything for everyone else, and to focus more on me. I thought about this a lot as I agonized over whether I could really do this. As usual, Phil, our team founder and leader, had some pretty insightful words. He said that this is actually the most selfish thing I will ever do. While yes, I will be running for my patient partner, running to raise awareness of rare diseases and fundraising, most of what I will be doing will be by myself. All of the running I will need to do for the next 18 weeks. The intense training, making time for runs four days a week and cross training two other days. Especially the long runs that will sometimes take me three, four, five or more hours, when it will be just me, my thoughts and my iPod. Since I can’t compromise work, that is all time away from my family and friends. And we all know I never have enough time for my family and friends even without training! (I am truly sorry for that – I so wish there were more hours in the day or days in the week…) I’m actually joining Nick’s gym so I can see him on a regular basis. (And run inside on the track since I despise the cold.)

I also question whether physically I can do this. While Tara and the team inspired me to start running, I honestly still can’t jog one mile straight – even after all this training. I still walk/run, and probably always will – which my dad reminds me is better on my knees, anyway. I am out of breath within minutes. Some of you know I am on a clinical trial for a breast cancer drug, so I checked with my oncologist to be sure I’m ok to do it, even though this drug can significantly reduce my white blood cell counts. (She said yes.) Which actually reminds me of yet another reason I feel like I have  to do this: because now I can. I think of how sick I was in 2012, when I couldn’t run a 5k. And I think of others going through cancer treatments and surgeries like I did: I want to show them that they, too, can get through it and be strong again. And I want to do this for those who weren’t as lucky as me…

But I am slooooooooowwww. My goal is to finish before they close the finish line. (Seriously.) The theory is that if you can run a half marathon, you can run a full marathon. So I promised Phil that if I could finish the BAA half (which was one of my 2014 New Year’s resolutions) in October under 3 hours, which is just before they close that finish line, then I would run Boston. My time? 3 hours and 3 minutes. Theoretically, that means (especially with the next 18 weeks of training) I should be able to finish the marathon in 6 and a half hours, and I know the finish line was still open at that point last year.

So how am I going to do this? Only with all of your support, understanding and prayers. Please don’t get mad at me for never being able to do anything or for simply being too tired to talk much. Know that I love and miss you, think about you often and am probably even having conversations with you in my head while on my runs. (Yes, this really happens. I think you all know way more than you do and I imagine what’s happening in your lives!) And when we do talk or write, please don’t mind that much of my side of the conversation will be related to Running for Rare Diseases and my training, since that will pretty much be my life outside of work.  And yes, of course, probably most of my Facebook posts, Tweets and Instagrams will be related to this, too… And I would really love to see you at Mile 14 where our patient partners, team members who will be running Providence, colleagues and other friends and family will be gathered to cheer our team on – or anywhere along the marathon route on April 20 – I will be one of the very last runners so you shouldn’t have a problem seeing me…

And yes, this means I will be hitting you up for donations. As daunting as running 26.2 miles is, raising the minimum $3,500 for the  Genzyme/NORD NIH Undiagnosed Diseases Program (UDP) Fund will be just as challenging. Please know that if you intended to get me a gift for Christmas and/or my birthday, I’m making it super easy for you! I seriously, seriously do not want anything for Christmas or my birthday except donations to my Running for Rare Diseases page (except you, Cory – you’re not getting off so easily, and anyone who is actually making me something homemade like mom). So if you planned to spend $5 on a gift for me, please instead donate $5 to my fundraising page: https://www.firstgiving.com/fundraiser/AmyAtwood/2015-running-for-rare-diseases-team No donation is too small. Every cent counts.

Thank you for your love, support (emotionally and financially if possible), understanding, prayers, positive vibes and patience with me through April 20, as I embark on this most selfish (and crazy) thing I’ve ever done.

Amy

p.s. Andrew (who is running the Paris Marathon for our team) and I are throwing a joint fundraiser – the first Running for Rare Diseases 2015 Marathon Team fundraiser – a Pub Night, on Friday, December 19 from 6-9 p.m. at the Lansdowne Pub near Fenway Park. Tickets are only $10 in advance or $12 at the door and include a raffle ticket and free apps (while they last – come early)! Hope you’ll join us!

p.p.s. Join our Running for Rare Diseases community (if you haven’t already) by subscribing to our blog, liking us on Facebook, following us on Twitter, Instagram and watching/sharing our Boston Marathon and Rare Disease Day Relay videos.

Thanks!

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So as I wrote these I thought how clichĂ© and dippy some of them are. I erased them all and started over multiple times. But they kept reappearing on the screen. Because even if they are dippy and clichĂ©, they are true. They are the things that I’ve finally learned and come to know as true, and they help me every day in my quest for a happy life…

21. Do what makes you happy. Not because someone told you to. Not because it will make you money. Just do something because you love it. If you’re passionate about something, everything else will follow.

22. Happiness is contagious. It’s hard not to smile back. Make someone else smile today. It’ll make you happy. It’s a fabulous circle!

23. You know what else can make you happy? Running. I never would’ve believed it, but once I tried it, I found it’s true. That whole endorphin thing, I guess. I actually always think I hate running when I start out, but once I get going my mood totally improves, and after I always feel better than when I started.

24. Music. Another thing that can totally change your mood. (And why is it that you can always remember the words to songs, even (especially) the ones you can’t stand???)

25. Travel. Explore. Discover. Whether it’s by the Mediterranean Sea, the streets of San Francisco or the mountains of New Hampshire, you’ll find new aspects of you along the way.

26. Be yourself. Don’t try to be anyone else. You’ll never succeed and it’s not worth your time or energy. Love yourself as you are. But…

27. Know that if you are not happy with yourself, you are the one person who can change things. You have control over you. Don’t waste your time being miserable.

28. And don’t waste your time with people who don’t treat you the way you deserve to be treated. If they make you cry more than smile, it’s a clue that you should get out. (It took me way too long to realize that one. Please trust me on this one and if that sounds like your relationship, get out now!)

29. In fact, don’t waste any time. Your time. Other people’s time. Nothing is more precious.

30. Guilt is a wasted emotion. If you feel guilty, do something about it. Change it. Or get over it.

31. Your parents probably do know best. And they will always worry about you, know matter how old you are. And when you become a parent, the worry will never end. It just comes with the job.

32.  Every day is another chance to start something new. Or start over. It can be whatever you want it to be.

33. Don’t let anyone else put you down, discourage you or tell you that you can’t do or be something. Usually they are the ones with the issue.

34. Encourage others. Boost them up. Help them find their way and thrive. It takes nothing away from you – you both win.

35. Spend time talking with your elders. Learn their stories. They are your stories, too, and they’ll be lost if you don’t listen… and spend time with the younger people in your lives, too. They can benefit from your experiences, and you can learn a lot from them, too – like how to relax and play! (Something I’m always trying to learn – the relax part…)

36. Learn the art of compromise. I’m trying. It’s something I’m still learning, but what I do know is that you can’t have everything your way all the time. And that’s ok.

37. Everything happens for a reason. We may not always understand it, but the reason usually becomes clear later on. (I’ve often thought that maybe the reason I got cancer was to help raise awareness and save others. So do your self checks people!!!)

38. Say thank you. Be grateful. Appreciate everyone who is there for you, helps you, loves you. Thank you are two words you can never say too much.

39. Pray. No matter where you are, what time it is or what’s happening around you, you can pray. It’s one thing that always helps make me feel better. And the other…

40. Deep breaths. Breathe. Just breathe.

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