29 March 2016

Running The Boston Marathon — Together

Running for Rare pairs up runners and rare disease community members to raise rare disease awareness and raise funds for the the National Organization for Rare Disorders, Inc. (NORD) and National Institutes of Health (NIH) Undiagnosed Diseases Program. 
As a fibromuscular dysplasia patient, I have been fortunate to be a patient partner for two years now — first with Jessi Colund in 2015 and now with Martha Staples. I am humbled to be a source of inspiration for these women who have put in mile after mile and will be at the starting line for the 120th Boston Marathon bright and early on April 18, 2016.  
I am not a runner. I never have been, and I don't anticipate I ever will be. A physiatrist friend of mine is recommending I start a program of "vigorous walking" for five minutes a day for four to seven days and then doubling that to 10 minutes a day. He wants my heart rate up. I told him that unloading my groceries gets my heart rate up. It's a matter of stubborn chicken and stubborn egg. If I exercised more, perhaps I wouldn't tire so easily, but I tire so easily, so I don't want to exercise more. A.K.A. — it's hard, I don't want to do it, please wave a magic wand. When I invent the magic wand, I'll be sure to let you know. 

Martha and I have been getting to know one another through email, Facebook, and phone calls, and we wanted to share a bit about ourselves and our partnership with those who may also be runners or rare disease patients. 

Name: Martha Stapels
Age: 39
Job: Principal Scientist (Chemist who analyzes proteins)
Years Running: 4 years in grad school, 10 year hiatus, 4 years since, so 8 years total
Years with Running for Rare: 2 years
Longest Run to Date: 28 Miles!!!
Marathons Already Completed: 5 (Portland, OR 2002, Baystate 2014, Boston 2015, Grandma’s 2015, and Marine Corps 2015)
Why Are You Running: To raise money and awareness about rare diseases and to inspire my kids to dare to try hard things.
1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.
There is always a point in a long run that I want to give up. I try to think about strong runners who inspire me, my kids, my friends, my family, my patient partner, my running coach. Honestly, doing scientific research is very similar to running a marathon. It’s a long slow process and more often than not, things don’t work the first time. Being part of a team helps, and trying to move things forward every day is the only way to make progress. Thinking of who you’re working (or running) for really helps when you want to give up.
2) What is your personal motto?
Courage without fear
3) For what in your life are you most grateful?
I have two beautiful, smart, amazing, healthy, funny kids.
4) What are three songs that make you feel good no matter what?
5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?
Travel and run all over the world. Experience all of the beautiful beaches. Take my kids to see amazing waterfalls.


Name: Sarah E. Kucharski
Age: 35
Job: Coordinator of ePatient Programs at Stanford Medicine X; independent consultant
Years Running: 0
Years with Running for Rare: 2 years
Longest Run to Date: I ran the mile back in grade school for the Presidential Fitness Test.
Marathons Already Completed: 0
Why Are You a R4R Patient Partner: The physical and mental fortitude it takes to run just amazes me. I admire runners' drive to carry on past the pain. Such ability is something I hear echoed in the rare disease community, as so many patients have no cure and no treatment but persevere.
1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.
After I had a stroke at age 27 and was working part-time, I decided to go to grad school. My program required one science course. The course offered at the time was online and about biorhythms. The professor was out for the semester and had left teaching to an assistant. I'm a good student. When I — and a majority of other students — failed the first few assignments, it was clear that something was amiss, but to make matters worse we only received our failing grades after the course's drop date. Even though offered an exception to the drop date, I was in a bind. Another science offering for the program wouldn't be until two semesters away and thus delay my graduation. I used my frustration and anger as a catalyst. I studied, learned how to speak the language the TA wanted, helped other students as much as possible, and learned from others. I resented that the material in and of itself wasn't that hard and that the TA wasn't grading on whether students understood the material — just whether they could regurgitate what they had been told. In the end, I passed the class with an A, and followed up with administration to improve the course and the program overall for future students. 
2) What is your personal motto?
"Many times in your life you may feel that you are failing, but ultimately you will express yourself, and that expression will justify your life." — from Irvine Stone's Lust for Life
3) For what in your life are you most grateful?
I absolutely treasure my parents. They are my advisors, my confidants, my friends. I admire them for their values and the strength and courage they have shown in being MY parents. While being such incredible supporters, they also have allowed themselves to be emotionally vulnerable, which has helped us get to know one another as individuals. 
4) What are three songs that make you feel good no matter what?
5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?
I've been working on a bucket list for several years. I've been fortunate to check off many things on that list, while some have been scratched off for other reasons and new things added. The top three things on that list are 1) pet a tiger 2) get more than a magazine article published — preferably a book 3) write a book. 


Help me recognize Martha's dedication and efforts to make a difference in the rare disease community by making a donation to her fundraising page, available via Crowdrise.com at http://bit.ly/1TbgUbE.

36 comments:

  1. i really like this article please keep it up.สล็อต 999

    ReplyDelete
  2. Fabulous post, you have denoted out some fantastic points, I likewise think this s a very wonderful website. I will visit again for more quality contents and also, recommend this site to all. Thanks.สล็อตวอเลท

    ReplyDelete
  3. Interesting and amazing how your post is! It Is Useful and helpful for me That I like it very much, and I am looking forward to Hearing from your next..บา คา ร่า วอ เลท

    ReplyDelete
  4. Thanks for sharing this information. I really like your blog post very much. You have really shared a informative and interesting blog post with people..บา คา ร่า วอ เลท

    ReplyDelete
  5. I was looking at some of your posts on this website and I conceive this web site is really instructive! Keep putting up..สล็อตเว็บใหญ่

    ReplyDelete
  6. I am happy to find this post very useful for me, as it contains lot of information. I always prefer to read the quality content and this thing I found in you post. Thanks for sharing.บา คา ร่า วอ เลท

    ReplyDelete
  7. Nice post! This is a very nice blog that I will definitively come back to more times this year! Thanks for informative post.สล็อต ฝาก-ถอน true wallet ไม่มี บัญชีธนาคาร

    ReplyDelete
  8. This is a great post. I like this topic.This site has lots of advantage.I found many interesting things from this site. It helps me in many ways.Thanks for posting this again.บาคาร่าวอเลท

    ReplyDelete
  9. Great things you’ve always shared with us. Just keep writing this kind of posts.The time which was wasted in traveling for tuition now it can be used for studies.Thanksสล็อตออนไลน์

    ReplyDelete
  10. I have read your blog it is very helpful for me. I want to say thanks to you. I have bookmark your site for future updates.สล็อตแตกง่าย

    ReplyDelete
  11. I read a article under the same title some time ago, but this articles quality is much, much better. How you do this..สล็อตxo

    ReplyDelete
  12. Positive site, where did u come up with the information on this posting?I have read a few of the articles on your website now, and I really like your style. Thanks a million and please keep up the effective work.เว็บสล็อต

    ReplyDelete
  13. Im no expert, but I believe you just made an excellent point. You certainly fully understand what youre speaking about, and I can truly get behind that.เว็บสล็อตเว็บตรง

    ReplyDelete
  14. Very interesting blog. Alot of blogs I see these days don't really provide anything that I'm interested in, but I'm most definately interested in this one. Just thought that I would post and let you know.เว็บตรงสล็อต

    ReplyDelete
  15. This is very educational content and written well for a change. It's nice to see that some people still understand how to write a quality post!เว็บ ตรง

    ReplyDelete
  16. I just couldn't leave your website before telling you that I truly enjoyed the top quality info you present to your visitors? Will be back again frequently to check up on new posts.เกมสล็อต

    ReplyDelete
  17. very interesting post.this is my first time visit here.i found so mmany interesting stuff in your blog especially its discussion..thanks for the post!สล็อตแตกง่าย

    ReplyDelete
  18. ดูหนังไม่กระตุก หนังHD หนังฝรั่ง หนังเอเชีย หนังออนไลน์ ดูหนังไม่เสียเงิน ดูหนังผ่านสมาร์ทโฟน หนังเต็มเรื่อง
    ดูหนัง เน็ตฟิก

    ReplyDelete
  19. เว็บพนันสล็อตออนไลน์อันดับ 1 ในทวีปเอเชีย เล่นไม่มีขั้นต่ำ ฝาก-ถอน รวดเร็ว ทันใจ
    สล็อตออนไลน์

    ReplyDelete

"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha

Dissing Ability

Whether in odds or evens, flights, or cases, stairs divide the cans from the can nots. When I was discharged from the hospital, misdiagn...