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WINNING WITH GRANTS

Winning with ALS offers grants to support the needs of children who live in a home with a parent that has been diagnosed with ALS. If you are interested, please complete the application form below.

Read some of their stories below and nominate a family we should know about!

In 2018 Winning With ALS presented a grant to the Eviston family of Fort Thomas, Kentucky so that they could visit Disney World.

The Millers know first-hand how magical a family trip can be and how much planning goes in to making such a trip with and ALS diagnosis. Their trip to Oregon sparked their desire to ensure other families get to make similar memories.

Miller Family Cross-Country Train Trip to Pickathon, Portland OR – July/August 2018

 

Thanks to the generous funds donated by the Team Gleason Foundation; Tom Miller, his wife Andrea, daughters Grayson and Camryn, and close family friend Sandra Patterson-Combs were able to take the trip of a lifetime by train from Cincinnati, Ohio to Portland, Oregon to take in the three-day music experience that is the Pickathon Music Festival. This is a diary of their travels and what the trip meant to them.

Music has always been a big part of Tom and Andrea’s world; going out to catch live music has been a regular activity in their social lives for the past 30 years. As a teenager in Fort Mitchell, Kentucky, Tom was very close to the Schoenborn family; sons Zale and Eric, and their parents Ted and Carol. The family introduced Tom to bluegrass, singer-songwriter country and other music genres, and he was hooked – on all of it. Years on down the road; Zale and Eric would become the founders of Pickathon (https://pickathon.com) based in Happy Valley, Oregon, near Portland. Tom and Andrea wanted to combine Tom’s long-held desire for a train trip across the U.S. with attending the festival, now in its 20th year.

 

With a lot of planning and Team Gleason’s help, the family set out from Cincinnati’s historic Union Terminal on July 31, 2018, bound for Chicago on Amtrak’s Cardinal line. Tom and Andrea’s sleeper cabin was on the ground floor, Sandra and the girls on the second floor. In Chicago, they made the transfer to the famous California Zephyr train, which runs through some of the most spectacular scenery in the American West. On this leg of the trip the train crosses through Iowa, Nebraska, Colorado, Utah, and Nevada into California. The scenery viewable from the train was a wonder to all of them, a wholly different experience than traveling by air or car. They saw pronghorn antelope, elk, deer and coyote, and while passing alongside the Colorado River, they were treated to an odd sort of wildlife – dozens of rafters mooning the train, a long-held tradition in the area. The train then followed the astonishing Book Cliffs from Western Colorado into Eastern Utah.

 

For Tom, one of the highlights of the trip were the small railroad stations along the route, several of which they were able to stop at, get out and have a look around. He loves their long history, architectural significance, and that they’re still standing; wide overhangs sheltering all those who have waited for a train to take them away on an adventure. Another was meeting people, including a man and his daughter who were traveling out to section-hike the 2,653 mile-long Pacific Crest Trail that runs from the Mexico/U.S. border to its Northern terminus at the U.S/Canadian border. The people got even more interesting once the Millers boarded the Coast Starlight in San Francisco; bound for Portland Oregon. The crowd on this train got a little raucous, annoyed that the train was running very late. At some point there was even a train-wide announcement that the bar was being shut down to restore order! This bit of drama didn’t overshadow the incredible scenery on this last leg of the trip. At some points the train literally felt like it was running atop the water, and for Tom, passing through the Cascade Mountains even topped going through the Rockies.

 

When they finally reached Portland, almost 10 hours late, there was the very real concern that the BraunAbility (https://www.braunability.com/us/en.html) van they had rented to transport them to their hotel and then on to Pendarvis Farm for the festival wouldn’t be available. As the universe would have it, an employee went above and beyond, after hours - to bring the van and show them how to use it! After dumping their luggage, it was off to Pickathon where Tom was able to hang out at the Galaxy Barn stage, which was easily navigable for his chair, and check out bands as diverse as Black Pumas, Bee Bee Sea, Phil Cook & Friends, and many, many more. Pickathon is a thing to behold, a full-on sensorial experience that fills up your heart; there’s nothing else remotely like it. Dear friend Sarah King who was there this year too calls it Pickathon Magic. 

 

For Tom and Andrea, the rhythmic calm of the train rocking across the country was the perfect lead-in to four wonderfully exhausting days at Pickathon listening to music with their daughters and dearest friends, new and old. Reconnecting with the Schoenborns was an incredible blessing – and as true friends always do, they picked up right where they left off so many years ago. It also empowered Tom and Andrea to think bigger as they approached the inaugural fundraiser for their newly formed non-profit Winning With ALS (https://www.winningwithals.org), The Cripple Creek Music Festival, which was held in October 2018. It was a huge success, and 2019 planning for the festival is underway! Tom and Andrea spent the final two days of the trip on their own, exploring and eating their way through Portland and feeling like they were on a wonderfully long date. The whole trip was magic, indeed.

 

To Team Gleason and all of the generous donors who made this once in a lifetime trip possible, we thank you from the bottom of our hearts.

 

Tom and Andrea Miller & Family