The Courage Crew Is Running for Rare Disease Day

I have a problem with inertia. The forces that get my engine firing seem to start late, work slowly, and then combust and burn all at once. It’s a long fuse to a full gas tank. Forget the spark plugs and the carburetor.

Whether it is an art project, a work task, or cleaning my house, my process always starts in the in-between moments. A few days later, I may look up, surprised to discover that I’ve been working for 13 hours straight. I get a lot done when I finally build up momentum, but the crash that comes afterward renders me useless. It is not sustainable. Finding the balance between imperceptible progress and full-blown obsession is something I have been working to improve for a long time.

One of the few things that I once had healthy control over was my fitness. Growing up in competitive sports meant that training was just another part of my day. It never required much thought. Even as an adult, I was able to maintain consistent fitness training until the pandemic hit. I used to have programmed workouts at the gym. I used to have rugby practice three times a week. The structure and community involved in training made it easy to keep going steady.

When the gym closed and rugby was canceled due to COVID-19, I stopped moving and lost my inertia. Over the summer, I hiked a lot and did the odd workout in my yard, but I had a hard time gaining enough momentum to stay the course without any structure or teammates to work with on a shared goal. 

Now that I am settled in Hawaii, I have started working out on my own more regularly by going on bike rides and hikes, and doing bodyweight exercise in my house. It’s still so hard to be consistent without a clear goal to work toward. So, I made one up. At the beginning of the month, I decided I would run a 5k in February. 

Telling people about my goal would have been one way to stay accountable, but I knew I wouldn’t back out if my friends and family backed my run with their money. So, I decided to ask for sponsors.

Last week, I celebrated my 30th birthday. For the past few years, I have asked for charitable donations instead of birthday gifts. Two years ago, when my mom was in the ICU awaiting her lung transplant, my friends and family donated over $500 to Donate Life California for my birthday. It felt so good to see them give to an organization that helps coordinate and educate about lifesaving organ donations like the one my mom would receive. 

I was trying to decide which organization I want to support this year when I read a column about running for rare diseases by Eunice White at Fabry Disease News. Sweet serendipity! All the ideas that had been bobbing around in my mind finally smashed together and started rolling. SeeRareRun is an annual 5k/5-mile virtual run, meaning you can do the race anywhere. All proceeds are donated to the National Organization for Rare Disorders (NORD). 

NORD is a U.S.-based nonprofit organization that supports patients with rare diseases and their families with educational programs, research funding, advocacy, and patient financial assistance. They are working everywhere, from Capitol Hill to the lab, from physicians’ offices to patients’ homes, to help improve the lives and outcomes of those living with rare diseases. 

NORD has a broad reach and an incredible mission to serve patients with rare diseases. SeeRareRun is a good starting place, but there are many ways to get involved if you feel inspired. If you are a patient, they may even be able to help you with your rare disease journey. 

I signed up for the race — which will take place this weekend — and sent out an email to family and friends asking for their support. I included a link to donate directly to NORD, and another to sign up for SeeRareRun. Now I extend the invitation to you.

If you would like to run, walk, or roll with me this weekend to celebrate Rare Disease Day, the cost to sign up for the 5k is $15. There is no pressure to move fast — I will not be, in spite of my best efforts — but simply to finish at whatever pace you can. We will make a difference by accepting the challenge and taking the steps. I would love it if you would join my team “Courage Crew.” It’s open to everyone, including those with mobility aids or wheelchairs. Sign up here.

I am happy to celebrate Rare Disease Day 2021 by running for Rare and supporting NORD. I hope you’ll join me!

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.