Where to begin ... The day we all knew would come is here. This year, Brett’s Brew Buddies will be without its namesake. We will all wear the white lanyard in Brett’s memory. Brett dedicated his last five years working to make the ALS diagnosis better for those who would follow him. The ALS Association of Western PA gave Brett the means to fulfill his mission. Not only did they help supply him with all the equipment he needed, they also gave him the opportunity to advocate for research funding and improvement of benefits for people living with ALS (PALS) both at the state and national level. He also took every opportunity to raise awareness by talking about the disease to anyone who would listen.
This year, Brett’s Brew Buddies will continue his legacy and work to raise awareness and funds for the ALS Association. The Western PA chapter focuses primarily on care services for PALS and their caregivers. They also provide equipment, education, and training to help PALS live the best life possible, all at no cost.
The Chapter consistently does an outstanding job in supporting PALS and their families. In 2022, the Chapter spent more than $1.4 million on programs and services for PALS and their caregivers. Our Chapter currently serves 297 families and has 134 new patients. Sadly, we lost 106 patients this past year. You may think $1.4 million on programs and services is a lot of money for so few families. To put this into perspective, the out-of-pocket cost for caring for a person with ALS is $250,000 per year. We used the Equipment Loan Program until the end. In 2022 the loan program provided more than 341 pieces of mobility equipment along with resources for daily living, speech assistance, personal care, lifts, and smart-home technology. These tools are provided at no cost to PALS, despite not being covered by health insurance. A real-life example is that while health insurance will pay for a wheelchair, it does not pay for ramps or lifts that will allow you to move freely in and out of your home. The Chapter also provides grants to help with home modifications and respite care as well as multidisciplinary ALS clinics and research. Seventy-five percent (75%) of Chapter funding is generated by events like this walk and other corporate and personal donations. Remaining funds come from government grants.
We walk to honor Brett’s memory and his work to help make a difference for those who do not have the support system that we have and for those who come after us. We walk so that one day we can celebrate survival rates; something that is, sadly, not possible today. We walk to make ALS a livable disease by 2030.
Brett’s walk is Saturday, September 9, 2023, at Point State Park. Please use the links to sign up to be part of Brett’s Brew Buddies. If you cannot participate, please consider a contribution that will make a difference for the people and families affected by ALS. If you would prefer to mail a donation, the check can be made payable to ALS Association Western PA Chapter and mailed to 638 Deer Creek Road, Valencia, Pa., 16059. We will mail the check to the chapter to be included in the Brett’s Brew Buddies team total.
ABOUT ALS
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS CAN STRIKE ANYONE. PRESENTLY THERE IS NO KNOWN CAUSE OF THE
DISEASE, nor any treatment.
JOIN THE MOVEMENT TO PROVIDE HELP AND HOPE TODAY!