Team Nancy
Thank you for helping us reach our Walk ALS fundraising goal! Walk ALS raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.
****
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. It is also known as Lou Gehrig’s disease as it ended that professional baseball player’s career and life. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS can strike anyone, just like a lightning strike. Presently there is no known cause of nor cure for the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need.
****
Team Nancy helps by fundraising thru:
· the Walk at Winton Woods Park on Sunday, 9/22/2024,
· the sale of 'Help Unlock ALS' bumper stickers and
· holding a Whiffle Golf Tournament planned for Sunday, 4/27/2025.
****
NANCY’S STORY
She was a loved and loving wife, sister, mother of two, grandmother of three, and friend to many. Nancy was a graduate of Mariemont High School and the University of Cincinnati. She retired as a dental hygienist having worked in private practice and in dental research until just a few years before her diagnosis.
Nancy began her journey following a hiking trip to the Great Smokey Mountains in September, 2018. She complained about a weakness in one leg. After fighting thru a whole series of tests, we were given the diagnosis of ALS in mid-January, 2019 and confirmed shortly after that. It was a life’s journey we traveled together but we both knew it would not play out as we had planned nor last as long as we had hoped. As it is with most patients diagnosed with ALS (pALS), Nancy’s disease worked itself inward from her periphery.
Our introduction to the local ALS United chapter began in February and we could not ask for a more helpful group. The ALS lending closet lent us various types of equipment that allowed us to try out to see if any of it could help us as we transitioned from one level of the disease to another; walkers, wheelchairs, shower chairs, lifts and even some personal items were available to us at no charge. We also attended numerous meetings that offered support to patients and caregivers. Experiences are shared, problems and solutions are discussed and lives and memories are celebrated in these gatherings; the support from each other is tremendous and much appreciated. Grieving by yourself in silence is just not fair.
Nancy celebrated two Christmases that last year. Her family and friends organized a ‘Christmas in July’ party for her. She also was able to celebrate everyone’s birthday one last time. She celebrated Fourth of July (her mom’s birthday), Halloween, Thanksgiving, her birthday and the real Christmas in 2019 with all of her family. Sadly, she was with us for only a few days beyond that.
Then, one evening, she simply went to sleep and never woke up.
Even though it was expected, it was still the hardest thing I have ever had to experience. Watching your life’s partner wither away with ALS is indescribable.
Slowly losing the use of your feet, hands, legs, arms, facial muscles and speech is unimaginable. Becoming totally dependent on your caregivers is unbelievable. Many of you who knew Nancy knew that she was claustrophobic so being unable to move was a hell unto itself. At least she has a relief from that now.
That's why Team Nancy is walking and doing the other fundraising efforts: to change the statistics; to bring help and hope to those living with the disease; to ensure that no one ever hears the words: "You have ALS" again.
****
The past few years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families.
But we can't stop now.
The key to a cure begins with you.
Please HELP UNLOCK ALS.