The 2019 Gonzo Golf ALS fundraiser

I’m not a frequent golfer, or a good one, but each summer since 1995 I’ve joined a group of friends who call ourselves the Gonzo Golf group for 4 days of non-stop golf in the Myrtle Beach area. We play 36 hours per day.  It’s exhausting and loads of fun, and we spend a lot of time giving each other a hard time. Not exactly your typical support group… I’m mostly ridiculed for my selection of meals at lunch, and so have earned the unwanted nickname “Cobb Salad.”

Last year I learned about my ALS diagnosis just two months before the golf trip, and I assumed that it would be the last time I joined the Gonzos, which made the trip bittersweet for me.  My friends were unaware of the diagnosis — I just told them I was limping because of some peripheral neuropathy the doctors were looking into.

Thanks to the slow progression of the disease, however, I was able to join the Gonzos again this month, and got in 6 rounds of golf over a long weekend.  I was walking a bit slower than a year ago, but felt great and even got in a few decent scores and a couple of birdies.  It meant a lot just to be able to play. My new goal is to play Gonzo Golf 2020.

What made the trip even more special is that the group decided to organize a fundraiser for the ALS Association around the golf outing. Each agreed to chip in a certain amount of money for every par or birdie any of us made over the course of the trip. The group  ended up raising $2,000! I am so grateful to all of them for this amazing act of generosity and support.

A big shout out to Richard Terry, Tom Kazee, Sharon Kazee, Larry Garloch, Kirk Karwan, Pat Kirwan, Sam Adams, Jim Wright, Charlie Slagle, Todd Hermann, and Thomas Hazel.  As always, thank you Tom and Sharon for letting us crash in your house and for all your hospitality. And special thanks to Richard for conceiving and organizing the fundraising.

The photo is missing Thomas, Sharon, and Pat — next year I’ll time the photo shoot better to make sure all of us are in it!

Advocacy time

I’ve been invited to serve on the board of the ALS-Association Public Policy Committee and have gladly accepted.  I’ll be attending the ALS national advocacy conference in DC next week and hope to play a very active role. First, I have a lot to learn about the agenda and strategy for lobbying for changes in laws and funding of ALS research. Stay tuned.