As those who are familiar with the disease know, ALS is always fatal and can strike anyone at any time. It takes away the freedom to walk, to talk, to run and dance. To laugh. To hug. To eat. And eventually, to breathe.
What is an #ALSAlly
An #ALSAlly is a donor who commits to making a monthly contribution to help those living with ALS in western Pennsylvania.
Why Become an #ALSAlly
Monthly donors allow The ALS Association to advance research and provide much needed care and services to those living with ALS with consistent reliable funding.
By becoming a sustaining donor, you can:
- Budget your charitable donations, while saving time.
- Invest in cutting edge ALS research, important public policy work, and provide critical patient care year-round.
- Allow The Association to focus on growth, enhancement, and innovation to bring better solutions and hope to the ALS community.
Your sustaining gift will help our Chapter provide much-needed services to patients and their families, especially during these trying times. By becoming a part of The ALS Association Western Pennsylvania Chapter family and making a recurring gift today, you will help sustain hope in the ALS community.
What is it like to be an #ALSAlly (sustaining donor)?
Q&A Session with Joan Gaspersic
Q: How long have you been donating monthly to The ALS Association?
A: This will be my 4th year as a sustaining donor.
Q: Who do you give in memory of? Can you tell me more about her and her story?
A: I donate in memory of my mom, Loretta Jean Barbish, who was diagnosed and died from ALS in 2011. Although we think she was experiencing minor symptoms for a few years, it wasn’t until 2011 when her condition worsened and we realized this was more than just muscle weakness due to aging, that we sought a specific diagnosis. Sadly, she went downhill very quickly after her diagnosis and passed away six months later.
My mom was a very kind, generous, and loving wife, mother, and grandmother—just what you would expect of someone from the greatest generation. She was the glue that held our extended family together and kept in touch with everyone no matter what was going on with the family dynamics. She wrote cards and letters to all her nieces and nephews, and then to the next generation too. She had all the birthdays written down and sent birthday cards to everyone every year. Family was very important to her.
She was an excellent baker and so many times she would bake some goodies and then give most of them away to friends and neighbors. I really miss the taste of her apple strudel and the many varieties of cookies she baked every Christmas.
She loved to do various crafts. Quilting, painting, and crocheting were things that she excelled at, but there were many other crafts that she dabbled in over the years. She would make quilts for children and then donate them to charity. She always liked to gift things that she made and I have many items it my house that are products of her handiwork. I think of her and miss her every time I look at something she made.
My mom did many kindnesses for people over the years, however, she was very humble and never looked for recognition or wanted to be the center of attention. After she passed away her friend told me this story. An elderly neighbor was widowed and lived alone. My mom would stop over at her house every evening just to provide some companionship. They watched Wheel of Fortune together every night for a couple of years. I thought that was a cute story, and showed just how kind and considerate my mom was to take that time every day so her neighbor wasn’t lonely.
Q: What services did your mother receive from The ALS Association?
A: First and foremost, when my mom was diagnosed with this disease we really had to educate ourselves on what we needed to do and how the disease might progress. It was a very scary time for us, and The ALS Association was a resource to ask questions and get advice. They were more readily available than the doctor for routine questions. We were grateful for the genuine concern, general conversations, and emotional support we received from the ALS Association, and from Marie Folino in particular.
Additionally, I was able to attend a symposium that they organized with several speakers addressing various issues relating to ALS. Besides being an educational opportunity for me, it gave me strength and comfort to be with others who were either victims of ALS or caretakers.
The one service that was most beneficial to us was transportation to the doctor’s office at Allegheny General. When Mom became wheelchair-bound, the transportation they provided was an invaluable help to us.
Q: What did you find most valuable from yours or you mother’s relationship with the Chapter?
A: Being around others who knew the struggles of ALS victims and their caretakers was comforting.
Q: What prompted you to become a monthly donor rather than making a one-time gift?
A: There are a few reasons: it’s easier to keep track of when I last donated—when I would get requests from The ALS Association I couldn’t remember if my last donation was last month or six months ago; by becoming a monthly donor it is simple to donate because it’s on auto-pay; also it was an easy way for me to increase my overall annual donations without taking a big hit to my budget in one month.
Q: Why is it important for others to become a monthly donor?
A: Since The ALS Association is a non-profit organization, I’m sure funding is always an issue. If a large number of people become monthly donors it will provide a reliable monthly funding stream. It provides financial security to the organization and will help them with planning throughout the year.
Q: How does it make you feel to contribute monthly and sustain the mission of The ALS Association?
A: I feel like this small and easy effort is my way of saying thank you to the ALS Association for the support they provided to my mom during those final months of her life. It also provided support not just to her, but to my dad and me as we were trying to make the best decisions for my mom’s care.
Q: What would you say to others on the fence about joining as a monthly donor?
A: To me it’s a no-brainer to become a monthly donor. If you support the mission of the organization and want to see it thrive, the monthly donation is the way to go. I have my donation charged to my credit card and it’s a painless thing. I know that my donation will be sent automatically and it’s not something I have to remember or have to write a check.
Q: In one or two sentences, why you are an ALS Ally?
A: The ALS Association provides support to people battling a terrible disease. If my donation can help ease someone else’s life, it makes it worthwhile. When my mother was suffering through this terrible disease she, as well as our family, appreciated all the help that we received from the ALS Association, but we never really took the time to think about who was paying for this assistance. I now realize that it was through the generosity of many people that I will never meet that made our struggle a little easier. I now hope that I can help others in their struggle and bring them some comfort too.