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IFCR at the Million Dollar Bike Ride

Team Riding for a Cure is back riding for IFCR in the Penn Medicine Orphan Disease Center (ODC)’s 11th Annual Million Dollar Bike Ride (MDBR) on Saturday, June 8, 2024 to raise money for CDKL5 research.

Team Riding for a Cure, led by former IFCR board member, Kristin Kozera, is back at it participating in this special annual event. Kristin shared with us about the event, why this effort is meaningful for her and the IFCR, and how you can get involved!

How long have you been fundraising for IFCR’s Team Riding for a Cure and what prompted you to lead this effort? We have been participating in MDBR since 2016. We live just outside of Philadelphia, so this ride is local to us.  When we heard that we could participate in something that generated money that went directly toward funding research grants for CDKL5 we knew we wanted to get involved.  At the time, we were very active in the triathlon/biking scene so this was right up our alley.  

How would you describe the event day to someone who had never attended before? This event is truly amazing!  It is hosted by Penn’s Orphan Disease Center, so in addition to the riders who are riding for CDKL5, there are many other teams there representing so many different rare diseases.  These are almost exclusively rare disease parents just like us raising money to find a cure for their kiddos.  Many of the doctors from ODC and Penn ride as well (shout out here to our favorite, Dr. Eric March, who runs the CDKL5 Center of Excellence at CHOP). The vibe is hopeful and enthusiastic.  They have a huge tent set up with food and refreshments for after the ride – the food is great and the people are even better.  It’s amazing to hear what’s going on in the rare disease space from parents who get it.   

What goes into preparing for the day? There are 3 distances you can ride to participate – 10 miles, 32 miles and 70 miles.  If you plan on doing either of the longer two distances, I would recommend a bit of training ahead of time.  The 10 mile ride is relatively flat and almost entirely closed to traffic – anyone with a bike can do it!!  All the ride distances are well supported with rest stops to re-fuel. If biking is not your thing, ODC recently added the “Million Dollar Mile” open to walkers (and wheelchairs).

If someone wanted to get involved with your team, what are some ways they could? In addition to the riding and walking routes, Team CDKL5 Riding for a Cure hosts one of the rest stations along the bike route.  We man a rest station for the LONG ride – for the riders who are brave enough to take on the 70 mile distance.  This table is pretty far outside of the city, which makes it easy for locals to pitch in a few hours to volunteer without having to drive into the city.  If you want the MDBR Vibe (and I recommend it) – there are plenty of opportunities to volunteer on-site with ODC.  We get ‘credit’ for the number of riders AND volunteers, so it all counts.  Help is always needed for parking, registration and event organization.  

What is one of your best memories from all the MDBR events over the years? I would have to say our first year.  We weren’t sure what exactly to expect, but it really is electric.  So many people from the ODC who are actually DOING this work to find cures are there, riding and meeting the families whose lives they hope to change.  The passion is palpable and the ride itself is just a ton of fun.

You ride in honor of your daughter, Avery. Tell us what you love about Avery. Avery turned 10 in February, and she is just the sweetest girl. She has the biggest smile (and the sassiest side-eye).  She lights up our lives and we love her fiercely.  It is my privilege to be her mama and I love being able to participate in this ride which has funded thousands of dollars of CDKL5 research over the years. 

We want to thank Kristin and Team CDKL5 Riding for a Cure for their continued fundraising efforts for the IFCR and MDBR and for getting out to ride year after year. If you’d like to join in by riding, fundraising, or volunteering on June 8, 2024 you can learn more at this Team link or email Kristin (kkozera@cdkl5.com).