The Good, the Bad, the Ugliness of ALS

Summer here, sharing recent updates on Grayson’s ALS journey this spring. Let’s start with the good. Grayson performed his 2nd House Music for ALS at Old Town District in Black Mountain, NC, on March 29. The turnout was an intimate crowd with many friendly faces from the Asheville zydeco dance community and friends. Grayson and friends raised about $2,500 dollars for ALS research! Another feather in his cap at the convergence of what he loves and making an impact. Thank you to all who attended the event and donated! Special shout out to our mystery donor who anonymously gave $1,500 for the fight. Generosity is everywhere. Thank you, kind stranger.

Now, the hard news. Grayson is experiencing some unmistakable declines over the last few months. Our day at Clinic with his ALS care team on March 31 confirmed with clinical markers what he’s been living and observing: reduced forced vital capacity (FVC), changes in gait, some difficulty catching air. The investigational drug Grayson has been on (Ibudilast, MN-166) as part of an Expanded Access Program (EAP) has not demonstrated to improve his ALS symptoms. As such Grayson is discontinuing this medication and others.

We remain deeply grateful for your support and interest in Grayson and our family’s journey, in good times and hard. Encouraging outreach, inquiries, donations — all welcome. On the bright side, we are planning a 3rd House Music for ALS event for end of May in Durham, NC. I just know Bull City will turn out with big love and support. Stay tuned for details.

Onwards — with our love — xoSummer