Wednesday, April 29, 2015


I started running around the time that my Dad was diagnosed with frontotemporal dementia (FTD). He had been a runner for 35 years but dementia would soon take away his ability to run like he used to - so I wanted to run for him. In the beginning, it helped me cope with all the emotions that came with learning that the person you love most in the world has a terminal illness. And for a few years that's all it was for me - a coping mechanism. I was sad, so I ran and thought about my dad.

When I decided to run my first marathon, the fundraising I did for an organization connected to the disease that my Dad was suffering from became a new form of coping. Where running helped me work through my own feelings, fundraising helped me connect with a larger community. It helped me get comfortable talking about his disease. And it helped me to keep moving forward every day when the weight of my Dad's illness seemed too much to bare. I couldn't cure him, but raising money and awareness might help someone else, somewhere, some day. Fundraising became a beacon of positive energy during the last few years of my Dad's life.

The idea for Long May They Run was born during this time. I had trained for two marathons at that point, and had successfully raised thousands of dollars for an organization that did so much for my family and the FTD community. Raising money and awareness about FTD turned into something very powerful and important for me. I wanted to continue to have fundraising be a part of my life, but felt that I couldn't keep on asking the same friends and family to give money over and over again every time I wanted to run a race.

The idea popped into my head, naturally - on a run, that I could develop a small company where 100% of the profits would go to charity. So that's just what I'm doing. Here's what Long May They Run is all about: To inspire, remember, and appreciate how lucky we are to have the bodies we have. Your body is yours, you can do whatever you want with it, and that truly is the most beautiful thing.

The concept of running for those who no longer can has been motivating me for years, and I know that it can motivate others too. Maybe you have a loved one, a friend, or a friend of a friend suffering from an illness that has taken away their ability to use their body .. or maybe you know someone who has passed away and you want to use running (or cycling, yoga, walking, weight lifting .. anything!) as a way of remembering them and paying tribute.

All of the profits from Long May They Run will be donated to the New Hampshire chapter of the ACLU. Other than his family and running - social justice was the most important part of my Dad's life. He had been working with and supporting the ACLU for over 40 years, starting with the ACLU's National Prison Project in the early 1970's. He's not here anymore to fight inequality and speak up for those without voices… so I'm going to support an organization that works for those things every day and do my best to continue his legacy.

This gear is for you to wear when you're taking a yoga class with your best friend or running a 5K in memory of a loved one who you've lost. Wear it and have it remind you that there are so many out there who would love to be using their legs, their arms, and their brains in the same way that we get to every single day. Have it motivate you to get out there and use your body for something more than yourself - for those you love and in memory of those who are no longer with us.


jill said...

Love this so much. xxoo

Diane KC Hughes said...

This really resonates with me. My dad was a long time runner too but I didn't take it up until he passed away after an 8 1/2 year battle with cancer. I think about him all the time when I'm running. Thank you for all that you do.

Unknown said...

Yes! I love this!

none said...

My cousin died of leukemia nearly a year after giving birth to her second child. I started running immediately there after and not a minute goes by -- on any run -- that I don't think of her. Thanks for sharing. Xx.

amberivie said...

I love this! My Dad has been suffering with COPD for several years now and it's painful to see him struggle through even a simple conversation when he was so active with hiking and cycling for many years.

I'd love to know when you have more tanks in stock.


Sheila Lo Monaco said...

I'm too so touching by this it's amazing what great things can come after a tragedy, I'm just getting back on track with my love for fitness because I did lost someone so important to me. I think about it ever time How amazing would be if she was still here.
Thank you!

the Charioteer said...

nice blog. keep it up.

LT said...

I love your blog and the concept! You are amazing!