March 25^th, 2023, marked the 15^th year that the 24 Hours for Hank Foundation has put on our annual ski event fundraiser.  What started as a way to raise research dollars for better treatments and a cure for cystinosis has led to so much more.  The lifelong friendships and community involvement that have been created will be everlasting. 

Although our family has had a vacation home in Sandpoint since the mid 80’s in 2008 we were new residents, moving to Sandpoint only two years before.  When we had our first fundraiser in September 2008,(a 24-hour bike event, Cycling for Cystinosis, we had no expectations and honestly were just hoping some people would show up.  To our surprise, 100 people rode their bikes for 24 hours straight and raised $30,000 for cystinosis research!  Henry was two and rode a few miles with his training wheels.  I remember him saying to me while we were riding “See Dad I can ride a bike.  I don’t need people to ride for me.”  Little did he know at the time what we were really doing.  We made a lot of new friends that day and that was just the beginning. 

Only 4 months later in January 2009, we hosted the first 24-hour ski event at Schweitzer Mountain Resort (24 Hours of Schweitzer).  I look back now and wonder how we ever did that.  A few of us contrived the event while riding the 24-hour bike ride and pitched the idea to the resort in late September.  For 10 years the ski event fundraiser was followed on Saturday night with an Awards Dinner/Auction.  We were basically having two events in 48 hours.  Although only a small group of people did the pre-event planning it took over 40 volunteers to run the event.  Some long-time family friends, and others just people who wanted to get involved somehow and are now great friends. 

With the impact of COVID in 2020 the auction moved online, and the awards dinner was no more.  The ski event continued with a new format that was introduced in 2018.  No longer a 24-hour ski event but replaced with the longest Giant Slalom race in the United States.  A 2,400 vertical foot GS course that stretched out over 2 miles and took the fast racers nearly 3 minutes to complete.  Introducing the new format brought more new people and gave the people that had participated every year something new.  It is a majestic time at the start on the top of the mountain at 7:00am watching the sunrise and listening to all of the conversations of why they are there, how many years they have been participating, or what it means to be here. 

March 25^th, 2023 also marked the last ski event fundraiser.  It was a difficult decision to make with mixed emotions and now that it is done it feels bittersweet.  I’m sure next winter we will be wondering what to do with ourselves.  It was the right decision though.  After 15 years of relying on so many people and local businesses to help us, it is time to enjoy all the new friendships that we have made, in a new way.  I look forward to spending time with old and new friends reminiscing about the beautiful sunrises that we enjoyed together, or skiing in the rain, or freezing our butts off on the chairlift at 4:00 in the morning at past events. 

I can honestly never thank the community, our family, and friends enough for all of the love and support they have shown our family and cystinosis research over the last 15 years.  Without them we wouldn’t be in the place that we are today.  Thank you! 

Brian Sturgis