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?

Indigo Girls, "Closer to Fine"

Missy Elliot, "Get Yur Freak On"

Katrina & the Waves, "Walking on Sunshine"

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?

Tom Petty & The Heartbreakers, "I Won't Back Down"

Chemical Brothers, "The Test"

London Grammar, "Hey Now" (Arty Remix)

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.

A Book From a Bucket

When one makes a bucket list does he or she put the items on that list in the proverbial bucket once they have been accomplished or take them out? Does the list exist purely independently of the bucket? Or is the list written on the bucket, each item diligently crossed out with a stringent smelling, black permanent marker, and that bucket, once satisfactorily blackened, then kicked into the afterlife oblivion?

I first began writing my bucket list in June following yet another round of surgery. My stomach had ruptured seemingly on its own, which caused the doctors to be concerned that the event was the latest symptom in my troubled vascular history. I decided it was time to meet with a doctor who specializes in the disease it seems most likely that I have but have not yet been officially diagnosed with — fibromuscular dysplasia. My appointment is on Aug. 3.

Since writing the first 30-item bucket list, I have added six more tasks to accomplish; however, I admit that four of those six items were put the list simply so that I could say that I've already done them: Make my parents proud; Be in love and loved by a man who brings out the best in me; Be passionate about something and share that joy with someone else; Be true to myself. And while I am no closer to doing the number one thing on my list — pet a tiger — I have made a decision to bring me closer to items number two - get more than a magazine article published, preferably a book - and three - write a book.

By January 2012 I will have accomplished item 26 on the list — finish my master's degree — which will free up some time to do other things. With this time, and an official diagnosis, I feel that it will be the time begin work on a book. Doing so will in turn help knock out items 22 — raise awareness of whatever disease I am finally diagnosed with (all signs point to Intimal Fibromuscular Dysplasia), 23 - participate in research to help with the diagnosis of my disease, and 24 - help teach other patients how to be good patients who are proactive and involved in their healthcare. Consequently, I have begun a search for subjects to interview.

I am seeking:

Doctors or nurses willing to go on record about their experiences with patient care.

People who have been patients within a hospital setting or been seen by several doctors for one condition and are willing to go on record about their experiences.

People who have been patients within a hospital setting or been seen by several doctors for one condition and are willing to go on record about their experiences - AND - can get their doctors to talk about their case.

If you or someone you know fits into one of these categories, please contact me. Not all those who respond will be interviewed and not all of those interviewed will be included. My focus is narrow, though my hope abounds.