Voice of PALS
There were 2 men, Bill Prichard and Cliff Maus, with Bulbar-onset ALS. ALS started in their throat muscles and early on they lost their ability to speak. ALS slowly destroyed muscles in their limbs but each one showed more spirit than words could capture. These 2 men inspired the creation of the Voice of PALS at Upstate to support the ALS clinic and ALS research.
In 2015, Bill and Cliff volunteered to be subjects in ALS research using Transcranial Magnetic Stimulation at Upstate. From 2016 to 2017, Cliff Maus and his family initiated several local fundraisers in his hometown of Canandaigua, NY to support ALS research. Meanwhile, Bill was relentless and dedicated his last 2 years with strong participation in TMS research.
In June 2017, we honored Bill and Cliff at a luncheon at Upstate. Words were not necessary between the two. There was a clarity in knowing that their lives were ephemeral with a sense of purpose to affirm what they stood for – the Voice of PALS.
In June 2018, we honored the families of Bill and Cliff. Together with patients and members of the ALS Clinic at Upstate, the Voice of PALS Library was launched.
The Voice of PALS library is a lending library that allows our patients to use clinic-issued speech devices in their homes. Devices come with applications for speech generation fully configured to be useful for an individual with loss of speech and some loss of hand dexterity. Through a generous grant from Upstate Foundation’s Friend in Deed annual fund, patients learn about speech augmentation and, if necessary, a speech generating device is issued during clinic visit. Through the help of technology that can enhance abilities to communicate, the sense of disconnection and isolation may be averted.
We affirm that despite much function that is lost in ALS, so much more can be preserved. It is our hope that families and friends will move on knowing that Bill and Cliff wrote the last chapters of their lives with invaluable contribution to the ALS community at Upstate. Active participation in research using Transcranial Magnetic Stimulation in ALS has added critical knowledge to the field of developing a biomarker for early diagnosis and tracking disease progression. Fundraising activities has spread awareness and support for a devastating disease in our community.
There were 2 men, Bill and Cliff, with ALS. They lost their speech, but their voice will always be heard.
Voice of PALS Awards
The first ALS Teaching Day was held in late spring of 2016. First year medical students gathered in this same auditorium at Weiskotten Hall and listened to a talk about ALS. Dr. Eufrosina Young talked about the natural history of ALS, how the disease is vastly different in progression. A patient in the Upstate ALS Clinic, Mark Airel, talked about his ALS diagnosis of 8 years and how his muscles rapidly weakened leading to quadriplegia, but spared his throat muscles. That day, Mark Airel spoke, stole the show, put a face in front of students, and planted a seed in the minds of future doctors about a devastating disease. A medical student shared his thoughts at the end of the program. "It's been a tough first year in medical school and I had forgotten why I wanted to become a doctor. After listening to Mark Airel speak, I now remember."
In recognition of his contribution to the first ALS Teaching Day, we honor Mr. Mark Airel.
Jenna Gardner SLP
Persons with ALS or PALS lose their ability to speak either at onset or in the course of their disease. Loss of speech leads to an inability to communicate their needs during a clinic visit. Furthermore, ineffective speech leads to social isolation and inability to navigate a very debilitating disease.
Friend in Deed is the annual fund for Upstate University Hospital. The ALS Clinic at Upstate thru the work of speech pathologist Ms. Jenna Gardner, applied for a grant. The allocation of $5,000 allowed for funding of speech generating devices that augment speech. For those that have lost their abilities to speak effectively, or have lost hand dexterity and unable to write, speech generating devices are made available at the ALS Clinic at Upstate through a loaner pool called The VOICE OF PALS Library. Upstate Foundation’s Friend In Deed program is supporting what ALS patients have not lost – the will to be heard.
In recognition for her contribution to the first VOICE OF PALS speech generating device project, we honor Ms. Jenna Gardner.