Continuing to Race Against ALS
by Ali Lupfer-Staley
I write this letter in hopes that I can encourage my legislators to support and advocate for the fine people of Perry and Dauphin Counties whom are affected from the terminal illness of ALS, and that legislators from across Pennsylvania will also join our cause.
Before 2013, I probably could not give you many reasons why the ALS Advocacy was important, simply because I was ignorant of its devastation physically, emotionally, and spiritually on those diagnosed with the disease and their families. I was aware of ALS. I had read two articles in the Patriot News about local people diagnosed and thought to myself, what a scary and horrific disease. However, it’s a disease you read about “others” getting, because it never happens to you or your loved ones. How wrong I was to believe this statement.
Unfortunately, today, I can personally tell you that ALS has affected my family and ALS took the life of my beloved father, Dennis Lupfer. No longer were we the “others.” Every day after my dad’s diagnosis, we carried the burden of a raw sadness and grief that this disease was going to take our loved one away. I can’t imagine what my own father’s thoughts were. We tried to focus on the positive and the good things in life, but, as you can imagine, a black cloud looms heavily over your heads as the days tick by.
In August 2013, my father was diagnosed with ALS at the age of 58. He lived merely 18 months before his passing. His passing has left 2 loving parents behind who relied on him in the family business, his passing has uncoupled a marriage of 40 years and left behind a wife who misses him dearly and has left me, his only daughter and child, wonder how a disease can so quickly take a funny and hard working man and suffocate all his muscles so that he can’t talk or eat or move towards the end of his life. His passing has left two beautiful grandchildren, my 9 year old daughter Avery, who misses her best friend, her Pap, and my son, 3, who talks about his Pap and only hears funny stories and sees pictures since he was merely a baby when my father passed. His passing has left a gaping hole in the community he served in Perry County where he lived and cared much for- he is missed by many friends and family alike.
And though ALS is devastating and is unpleasant and my story can be one of sadness, my family and I refuse to allow ALS to define and dictate our lives. We refuse to be its victims, and refuse to live in ignorance and close our eyes to others who are newly diagnosed and living currently with ALS. You see, my family and I will continue to advocate for a cure and that is why I write you today and need your help.
First, I want to express how beneficial The ALS Association Greater Philadelphia Chapter has been to us and my dad and to other families in the central PA (especially the Dauphin and Perry Counties) region. The Chapter has been exceptional in supporting those with ALS through continuous events, awareness, benefits, etc. They have helped exponentially in local care services, one being in our own back yard, the ALS clinic at Penn State Hershey Medical Center. I can’t say enough about the fine people of the Hershey clinic and the wonderful care they give. They are all truly wonderful people. The chapter does exceptional work in ALS research and from what I’ve read, some new advances are on the horizon, but the research is so costly that the horizon is still far off.
Most importantly, The ALS Association Greater Philadelphia Chapter and the Hershey Penn Sate ALS clinic have served a number of people in the Dauphin and Perry Counties and beyond. My dad found through the Chapter and ALS clinic a genuine compassion during his battle with ALS. He was given a walker out of the clinic’s “loner closet” when he started having difficulty walking. My dad contributed to a research trial that hopefully helped in contributing to a third phase and sees advancement in finding a cure. These people served as our navigation tool through life whilst living with a diagnosis of ALS. They were our lifeline. I don’t know what we would have done without them! ALS is a terrible and scary disease, but I can attest that the Chapter and ALS clinic are here to empower those diagnosed and affected by ALS. They were always a phone call away with a patient, compassionate listening ear and they helped ease anxieties when we were in a situation that you don’t know what to do in.
I can vouch that these people who work so hard for the Penn State Hershey ALS Clinic and The Greater Philadelphia Chapter deserve to see all their hard work and dedication supported with your help and the budget. With your help and support we can continue to let the people of Perry and Dauphin counties living with ALS feel that someone cares and understands. Let’s allow these people to continue that hope and belief that ALS will some day no longer be a challenge for families because we found a cure!
One last thought. My daughter last October won the Fire Prevention Poster contest presented by then Senator Teplitz. We roughly live 5 miles from the capitol building. We toured the building, were treated impeccably, saw the ins and outs of a typical day of a representative and a senator, and saw the beauty and grandeur of our state! What a great experience! We were so proud of her, but sadly my dad wasn’t there to share in this experience. I know he would be so proud of her as well. Please let us join together and advocate ALS awareness and help in assisting those affected by ALS that live in the Dauphin and Perry Counties as well as those across our state. My wish is to know that my daughter understands that the people she visited with at the capitol building represent her wishes in ending ALS and represent her Pap and others living with ALS.
I appreciate your time and I hope that you sincerely consider supporting the 500,000 line item in PA.