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Bike MS: Waves to Wine Ride 2017

2016 Team Wine Not and our Inspiration
2016 Team Wine Not and our Inspiration

Wine not! for Evan

We are still a normal family. We work, our kids play sports and we enjoy spending time and having fun with our family and friends. However, since 2010 when our 5 year old son, Evan was first diagnosed with MS we have lived like we are walking around with an old grenade in our pockets, pin pulled and never knowing when, not if, it will detonate. I can go in to all the gory details of that but most know the story and if you don’t, email me, I’ll share because spreading awareness and participating in finding a cure and better treatments are our mission. Pediatric MS happens. If you think it’s hard for an established adult with a spouse, children and responsibilities…it is. Try tackling your future as a child with MS.

On New Year’s Eve of 2014 the grenade exploded. Our now 9 year old son was having another flare and it was bad (as was the initial flare). Though this time he didn’t lose his vision, he lost himself. He couldn’t speak, only scream as the pain in his head was so intense. 22 Days total were spent in the hospital between January and February. 3 Rounds of steroids, one treatment of IVig and plasmapheresis and he started coming back. I won’t get in to the numerous IV placements he had to endure because his veins kept giving out. I cannot explain the agony of watching your child in pain, scream for you when you were right in front of them and not know what they were saying or have the ability to recall what words they wanted to say.

Fortunately, our resilient boy has made a miraculous recovery and is almost completely back to normal although he struggles with short term memory issues and is fatiguing easier and lacks the coordination he had prior to the last flare but he is Evan again. Losing someone to death is devastating, losing a child’s essence of who they are while their body is here and suffering…worse.
Despite it, we are fortunate and thankful he has had a normal childhood since the last relapse...well relatively speaking. We have Evan but we are not done. The treatments are difficult, expensive and the long term affects, especially for children, are still really unknown. The financial toll on a family are immense. In fact, Evan has started the next chapter of treatment beginning a new drug due to the risk of PML (which can be fatal) on his last medication which was infused each month. He has done well with his new treatment and we are hopeful but not unrealistic, it will happen again, we just pray it's not severe. It's a lot for anyone to handle much less a child.
We ride because we do not want to sit idly by and do nothing. Ultimately, we want a cure in Evan’s lifetime but in the meantime, we want better treatment options and understanding.

Children DO get MS and it’s a lifetime of unpredictability.

We have been riding since the first year of Evan's diagnosis and many of our team members have been with us every step of the way from riding to cheering from the sidelines. To each of them and each of you, THANK YOU.

This is our 6th year and our little team of misfits raised $100,000 in our first 5 years. Our team is small, like Evan, but has a big heart and a lot of determination and despite why we ride, we have a great time together. In fact, over the years our team's kids have become old enough to ride and I'm proud to say they have joined our team as well. So proud of these kids for supporting Evan. Thank you Ethan, Casey, Jenna & Julia. Evan is anxious to ride as well but has to wait 1 more year.

Any support you can give is greatly appreciated to any of our riders is greatly appreciated.

Much love from all of us.
Carolyn, Kevin, Ethan and Evan

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Progress: 81.52%

Goal $25,000.00 Achieved $20,380.00

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