Bucket List Love & Support for Our Jon Skiff

Dearest friends, family, fans of Jon Skiff

It's with great sorrow and heartbreak we need to express our Jon has been diagnosed with ALS. Amyotrophic Lateral Sclerosis, also called Lou Gehrig’s, is a terrible generative disease which attacks nerve cells in the brain & spinal cord causing loss of muscle control. Jon’s ALS is a rare and aggressive form of Bulbar Onset. Unlike the typical pattern of ALS which affects the limbs first, eventually progressing to affect breathing and swallowing, with Bulbar Onset lung muscles, swallowing & speech deteriorate early. The prognosis for Bulbar Onset ALS is just two years. They believe Jon has already had the disease for a year.

There is no cure for ALS, no remission, only treatments to slow the disease’s progress which are limited and expensive. With the neurological, pulmonary & respiratory care he needs unavailable in Key West (like so many others in our community) he must make the trek to the mainland. He’s blessed to have been accepted as a patient with the ALS specialty department at University of Miami, one of the finest in the nation, with an amazing care team. Jon may have the opportunity to participate in medical trials, and we’re exploring cutting-edge stem cell therapies that could buy precious time. But all this means continued travel to Miami & beyond. Just the past month has required weekly trips with hotels and related expenses that will continue to drain his limited resources.

The disease is moving with frightening speed. His ability to sing has declined rapidly and playing his instruments is now a challenge. Losing his musical career is going to be devastating. Losing his source of income will be shattering. The medical co-pays have already exceeded ten thousand and the house in Key West, where he will continue to live, must be prepared for what’s to come as this beast takes over. We need to build handicap access and acquire other equipment needed as his condition progresses.

Our Jon has precious little time left to enjoy the freedom of life on his terms, and we’d like to help him check off a few bucket-list dreams, keep up with medical expenses, access specialty treatments and any other needs that may arise - he needs an outpouring of love and support to do this.

His wish is to get in some sailing, hopefully get an RV to allow him to spend the summer in Pennsylvania near his grandchildren. If his health allows him to take off on an adventure with his beloved Doc Watson to see some sites around the US, visit old friends, maybe gaze upon the red woods and dip his toes in the Pacific Ocean. Jon is so deserving of some bucket-list love, and the ability to spend this last stage of his life living his best possible life.

Please consider donating. Please also get in contact if you can contribute building materials, gift certificates for Home Depot or Ace for decking & ramps. And consider sharing this.

Our deepest gratitude,

Friends of Jon Skiff

Learn more about this devastating disease by visiting The ALS Association at www.als.org.