Henry Sturgis' Story

“People are looking for a way to help others, people are good, and people want to Fight for Hank.”

FIGHT for what you BELIEVE in…
By Rob Timmons, Board President, 24 Hours For Hank 

I have been fortunate to have known the Sturgis family since the 4th grade and have been including myself in their family events ever since. Dave and Mary have been as influential in my life as anyone and have always been there to support me and give me guidance when I have needed it most.

Brian and I have been through everything together and most assume we actually “share a brain”. Brian has always been there for me and has never questioned if I needed anything, just how can he help. To say that I owe the Sturgis family is an understatement and I will always be thankful that they have included me as part of their family.

Henry was born in July of 2006, and while everything seemed normal early on, it wasn’t long before signs of cystinosis started rearing its ugly face. The confusion and unknown answers were scary and frustrating. Not having a way to help my best friend was the worst feeling and no one seemed to be able to tell us what to do and how to move forward.

In May of 2008, I attended a work event to listen to a speaker named Larry Winget. Larry’s message isn’t like your typical speakers where they tell you to believe in yourself and “you are good enough”.

In fact, Larry’s message may be to some, very offensive and hard to listen to as his whole mantra is that we all need to take ownership of ourselves and stop making excuses for why we can’t accomplish our goals. One of the exercises that will stick with me forever is that he has everyone in the audience take out a sheet of paper and write one thing that they would like to accomplish but that they haven’t done yet for one reason or another.

My life changed at that point and I owe it mostly to Larry. After everyone in the room wrote on their sheet of paper what they haven’t been able to do, he told us to tear up our pieces of paper and throw them away. His message was clear, it must not be that important to you if you won’t take the time required to make it happen. He went on to talk about how people get so consumed in their day to day that they forget or don’t make time for what is truly important. That message stung as I opened back up my paper and read what I had written: “to find a way to help the Sturgis family”. How could anything more be important than that? After everything they have done for me and my family.

The good news is that I didn’t tear up my paper, I took it home and asked my mom and brother to meet me that weekend as I knew I needed help! I needed a plan and I needed to act immediately. It didn’t take long after that, after a couple of hours of brainstorming and thinking of a way we could make an impact, 24 Hours for Hank was born. I made some phone calls to a group of friends and family that I knew were also looking for a way to help and we were off and running. The idea for 24 Hours for Hank is simple, cystinosis is a 24-hour disease and treatments are 24 hours a day. We wanted to put people in a place with little or no sleep and push them physically so they could for at least one day experience a little of what Hank dealt with every day.

Things started moving quickly and the support was unbelievable. We decided to host our first 24-hour bike race only 4 months after the initial conversation. We had people reaching out asking how they could help, how they could become part of our events. One thing was very clear and has only gotten stronger every year since. People are looking for a way to help others, people are good, and people want to Fight for Hank. We have been clear on our foundation’s mission statement since day one: “To Find a CURE for Cystinosis”. We have hosted three 24-hour bike events, a trail run and now preparing for our 12th annual 24-hour ski event. We have raised over $1.5 million in donations and we have been fortunate to be part of something that matters and will someday allow all of us to say we stood up and fought for something we believe in.

I will never be able to thank everyone who has joined our fight and I am beyond grateful for all the new friends, the memories of the past 12 years and for their commitment to beating this disease.

My desire and focus have never been stronger, and I am grateful for what this foundation has taught me. I am full of hope as we head into the new year and I am looking forward to the day when we can announce that we have beaten this horrible disease.

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