Rev. Deborah J. Winters
Living with ALS
A word from our founder and ALS hero
I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) on March 10th, 2022. On that day, those three letters - ALS - rocked my world. In a breath, everything changed that day.
Before ALS – I was the lead pastor at Transformation Community Church. My life was physically active: walking the streets and meeting people; discipleship ministry within the substance abuse recovery community; working member of the Quick Response Team (QRT); launching a startup with my husband, Howard, in the middle of the pandemic with a “Worthy Ambition” to help people turn Obstacles into Opportunities. We were living a life ‘On Mission’ in the Best End (West End) of Huntington, WV.
After ALS – I cannot do what I used to do – some of my limbs do not work well, and I have much less energy. But I have turned my focus on what I can do: Shining the light in dark places, bringing joy and hope to those living with ALS. Whether as Chairman of the WV ALS Leadership council; serving as member of other ALS support teams; comforting and counseling other PALS (persons w/ ALS), I continue on mission as I have for the last 20 years – yes, diminished in my physical ability, but not my spirit, even though I know that someday I will die from this dreadful disease. But not today. There is NO CURE for ALS, it is 100% fatal – usually within two to five years of onset: my clock is ticking, and while I have time and energy I choose to make a difference … with your help and support!! And Maybe Not Tomorrow
ALS is not incurable, it is UNDERFUNDED and we need YOU to join us in the fight. We are partnering with the ALS Association to fight this disease. For the inaugural “ALS: Hope 4 Tomorrow” event your support will mean help for the hundreds of people living with this 100% fatal illness right here in West Virginia through grant programs, equipment loan programs, ALS clinics, and direct monetary support.
The average personal costs for a PALS: $100,000+ annually - out of pocket medical expenses and co-pays, medications, costs of house modifications, home health care, durable medical goods, special transportation, and more …… My life has been a series of challenges and learning experiences, however, for the last 25 years I have followed where Christ has led me – and He has led me and equipped me to strike out against this evil disease. Standing on His promises, learning to trust Him, I continue to have faith in a God who stills does miracles! Thank you in advance for your generous support!
By His grace alone,
Reverend Deborah J. Winters
Transformation Community Church
LIVING with ALS