Team Gleason had the great pleasure of meeting an amazing, inspiring ALS patient named Robin Mower and her husband John. We got an email from them describing their mission and and were excited to be able help them.
“Robin was diagnosed with ALS in September of 2009. Since her diagnosis, she has made it her mission to raise ALS awareness, raise funds for ALS research, and to help other ALS patients. Robin has been to Washington D.C. the last three years to speak with congressional members during the ALSA Advocacy Days. Robin has been on the local TV and radio stations to raise awareness, document her journey and has been a part of the MDA telethon. She has spoken to Trace Adkins, Donnny & Marie Osmond, and Kate Linder regarding her disease. Skydiving, motorcycle rides, music events and ALSA walks are just a few of the ways that Robin has tried to make people more aware of this terrible disease.”
Robin and John spent time at the Gleason’s house and Steve and Michel were both smitten with Robin. Her smile and positive attitude were contagious. They were talked into staying for Gleason Gras and “weathered the weather” and had a great time.
At the Gleasons, Robin said
“I originally wanted to go to Hawaii. But after my friend Rob Tyson passed away, I became very angry about the disease and I thought, “How can I be so selfish wanting to go to Hawaii, when you (Team Gleason) are helping other family pALS with ALS.” How could I be so selfish wanting to go there instead of paying it forward like you guys are”. I hope to one day be like you, Steve and to help others out the way you do.”
With the money raised for The Gleason Initiative Foundation, we were able to fund a large part of the gas money for the trip as well as an accessible van for them while they were in New Orleans.
Robin and Mike McCready, lead guitarist of Pearl Jam, at Gleason Gras2
Follow John and Robin on her Facebook Page: