This year’s Johnstown Walk to Defeat ALS®, presented by Stoystown Auto Wreckers, marks the 15th year that those in the Johnstown area have come together to raise funds and awareness for those in the community living with ALS. The first “Johnstown Walk to D’Feet ALS” was held in 2006 with a crowd of 278 walkers who raised over $58,000. The walk has since grown to 620 walkers raising over $118,000 in 2019. The Johnstown Walk to Defeat ALS continues to be a community event that honors those we have lost and raise funds to help those currently battling ALS. We look forward to recognizing 15 years of the Johnstown Walk to Defeat ALS with you and your family.
If you haven’t registered for this special 15th Anniversary Walk, REGISTER NOW
***Please note, the 2020 Johnstown Walk To Defeat ALS is not canceled, it is moving to a remote event. Each team captain will receive a walk kit with everything needed to plan their own mini-walk/event. Register today and kickoff your fundraising!
In honor of 15 years in Johnstown, TEAM WEEK IS NOW UNDER WAY!
With the 15th Anniversary Johnstown Walk to Defeat ALS just over 3 weeks away, it’s time to rally your team for Team Week! Starting July 1 and ending on July 6th, event staff will be sending out daily challenges to help you reach your goals while winning some awesome prizes!
The team with the most registered walkers to raise $90 AND complete their T-shirt order form by 11:59PM on 7/1, will win a special staff drop in at their event!
Please note: 7/1 is the last day to reserve your commemorative 15th Anniversary T-shirt! Take time right now and email friends/family/co-workers or post to Facebook to encourage donations so you can earn your shirt. Once you raise $90, reserve your shirt here!
Below is the official list of the week’s challenges:
NOTE: ***Each Challenge MUST be completed on the specified day to be eligible for credit.
** A Special Walk day surprise will be awarded to the team that wins the Grand Prize Drawing at the end of Team Week. Earn entries by winning or completing the Challenge of the day!
Be sure to visit our Chapter’s Facebook page for Team Week reminders and updates.
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.
“We found out that our dad was diagnosed with ALS the day after his only granddaughter’s first birthday party in Richmond…
This is noteworthy because he and our mom kept this burdensome secret from the world for over a month until we were together for the first time since they found out. And then for an additional two days while we were all together to not put a “damper” on the festivities.
My sister and I talked nearly daily for probably a month about how we were feeling to help each other process the news. We remember thinking about the birthday party weekend and all that transpired now with hindsight knowing that our parents were in pain and pretending not to be. That they were silently preparing to share this devastating news with us. One particular moment that we would have never thought twice about happened when our Dad quietly got up from his chair, walked over and handed a chair to our mom who was sitting on the grass. All while the rest of our family was carrying on blissfully unaware and unaffected. Our dad did not bring attention to himself nor did he ask for thanks. That is the essence of our dad. He shows how he cares with actions, not words. And he never asks for anything in return.
This is the second Father’s Day we are spending with our Dad who is now living with ALS. We feel like we have been through the ringer over the past year with information overload, waves of emotions, and most notably new feelings of togetherness as a family unit in this marathon of a fight. But we are incredibly grateful to be able to spend another Father’s Day with him. And a lot of that gratitude stems from watching our Dad fight this disease with grace and positivity.
As we reflect on Father’s Day this a year, we want to recognize him for his continued strength in battling this disease. For his positivity and optimism. For focusing on the good. For letting us in to help and learn and grow with him for the sole purpose of supporting him. For listening to our concerns and for the new developments we read about. For answering our questions about what he needs and what he is feeling. For letting us be part of his journey and not shielding us from his experience. For living his life to the fullest showing us that we should be doing the same.
Happy Father’s Day to all the dads living with ALS or caring for someone with ALS.
Memorial Day commemorates the men and women who died while in the military service of their country, particularly those who died in battle or as a result of wounds sustained in battle. In other words, the purpose of Memorial Day is to memorialize the veterans who made the ultimate sacrifice for their country. We spend time remembering those who lost their lives and could not come home, reflecting on their service and why we have the luxury and freedom that we enjoy today.
Honor Fallen Heroes by Participating in the National Moment of Remembrance
The National Moment of Remembrance is an annual event that asks Americans, wherever they are at 3:00 p.m. local time on Memorial Day, to pause for a duration of one minute to remember those who have died in military service to the United States.
Russell, a veteran who is living with ALS, was interviewed at the 2018 ALS Advocacy Conference. Hear what he had to say.
Military Veterans are approximately twice as likely to die from ALS as those in the general population. Read their stories of courage by viewing our Wall of Honor.
Throughout ALS Awareness Month The Western PA Chapter is working hard to raise awareness for ALS, and highlight personal stories of those impacted by this devastating disease. This mothers day, one daughter, Michelle Salamon, shares a her ALS story and honors her late mother, who lost her battle with ALS almost 15 years ago.
Living with and coping with an ALS diagnosis is never easy, but our lives are forever shaped by this disease and our efforts to move forward with hope continue.
Happy Mother’s Day from your friends at The ALS Association Western PA Chapter!
“One word that we’ve been hearing a lot lately is hero. Doctors, nurses, and front line workers are all heroes. They are special people along with so many more. But someone else comes to mind when I think of a hero, and that is my mom, Sharon. When she was finally diagnosed with ALS, not once did she ask why. She dealt with this disease head on. After a doctors appointment when at first, they thought it was myolonic dystrophy, I remember I bawled for hours. One thing she told us was that she wanted to be able to do what she could by herself for as long as she could. When the time would come, she would need help, and then she would ask. Unfortunately, it didn’t get to that point. She soon got to a point where she needed help with everything. She continued to fight as hard as she could, but after a 20 month battle, on December 29, 2005, ALS had gotten the best of her. No more struggles, no more frustration. I miss her terribly and think of her often. She did the best she could for as long as she could with a disease that people didn’t know much about in 2005. And while dealing with ALS, she never asked “why me?” For this, and so much more, my mom will always be my hero. (After quarantine is over), and you are finally able to see your mom (and celebrate mother’s day), give them some extra hugs and love.”
Awareness is critical to our vision of creating a world without ALS. The more people know about ALS, the more they get involved, and the more they support ALS advocacy, research, and care services. This kind of support gets us closer to finding potential treatments for ALS, and eventually a cure.
Throughout ALS Awareness Month, The ALS Association Western Pennsylvania Chapter will focus our attention on the impact that COVID-19 has on the ALS community, and remind the public that the temporary confinement, social isolation, and fear of tomorrow that our nation is experiencing during this trying time, is the unfortunate daily reality for many of those who are living with ALS.
“All Americans keenly look forward to the end of this isolation. But those of us with ALS will not be freed with the rest of the nation. Ours is an existence of isolation with no liberation or cure in sight. ”
– Brett Schoenecker, person living with ALS
“For a person living with ALS, exposure to COVID-19 would be catastrophic. As a result, people with the disease and their caregivers have no choice but to take extreme precautions that disrupt their access to care and support,” said Executive Director, Ryan Reczek. “We have been quick to modify our services to ensure that people who are physically isolated know that they are not alone.”
But we need your help to spread the word and keep the momentum going! It’s dedicated people like you who make everything we do possible.
Here are a few ways you can take part in ALS Awareness Month:
Many people, even if they’ve heard of ALS, know very little about what the disease is or what it is like. Share the graphics below with others—through social media, email, or even posting on your own blog or website. Full Graphic Kit Available HERE
Remember, every time you share or post something about ALS awareness, use the hashtag #ALSInThisTogether. This will make it easier for people to find more information on the topic, and increase the visibility of ALS Awareness Month.
Throughout May, we’ll be publishing blog posts, highlighting recent advances in research, sharing inspirational stories from people living with ALS, and providing tools for people to learn more about the disease and get involved. An easy way to take part in spreading the word is to simply share these posts on your social media accounts. You can stay notified of each new post, and easily share them, by Signing up to become an ALS Social Media Ambassador (#ALSAmbassador)!
The biggest thing you can do in the fight against ALS is to help raise funds for research and essential services for people who have the disease.
Throughout the month of May, the Chapter is turning to its fellow western Pennsylvanians for help to continue these essential services and asks those to consider kicking off ALS Awareness Month by making a donation.
Funds raised throughout ALS Awareness Month will directly support the over 300 people living with ALS that The ALS Association Western Pennsylvania Chapter serves at any given time.
Volunteers are essential to the success of The ALS Association Western Pennsylvania Chapter, which is why volunteer appreciation is so important to us. Our dedicated group of volunteers are working to improve our communities and helping our organization meet our mission to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
The selfless commitment and efforts of our volunteers should be acknowledged and recognized all year long. But National Volunteer week offers us a unique opportunity to formally recognize the efforts of the individuals who have graciously given their time and skill-sets to help us all create a world without ALS.
On behalf of our Board, our staff members, and those in our community living with ALS, thank you to all of our volunteers for your unwavering support and generosity. We truly appreciate that you have chosen to join us in this fight.
Below are quotes from a handful of the hard-working volunteers that help us keep our Chapter running smoothly.
“I started volunteering at the ALS Association after my dad was diagnosed because the chapter provided a community of support during such a difficult time. I continue to volunteer in hopes of giving back to the community that did so much for my family during my dad’s fight.”
“As a family living with ALS, we are acutely aware that many of those with this disease cannot speak for themselves. We are thankful to have the opportunity/ability to advocate for them. We speak up to raise awareness of ALS and to ask for funding/support, to help drive the search for a cure.”
Brett and Jeannine Schoenecker
“We were the recipients of many selfless gestures when our loved one was fighting her battle with ALS. Volunteering is our way of saying ‘thank you’ while paying it forward.”
“At the end of the day it’s not about what you have or even what you’ve accomplished… it’s about who you’ve lifted up, who you’ve made better. It’s about what you’ve given back.”
– Denzel Washington
“Growing up my parents instilled this message in us. My mom was the expert in Random Acts of kindness before they were even a thing! When I became a mom I knew I wanted to impart the same values in my daughters. It was easy to devote our time to the ALS Association of Western PA. Emma and Maeve were 10 and 13 when their grandmother was diagnosed with ALS. They experienced first-hand how the chapter helped their grandma live her best life each day with the many tools they provided her. We know how important their work is and feel happy to be a small part of what they do. We’ll continue to give our time and talents until we live in a world without ALS.”
Board Member, Board of Directors
“From the time I met my first ‘customer’ that was diagnosed with ALS I wanted to do more. The ALS community draws you in, no it absorbs you into their lives and community, unlike anything I have ever experienced. The people that I have met on this journey are beyond amazing. The persons living with ALS have the constitution of 10 people and their family’s commitment is unwavering. My service to the ALS Association will continue to be a lifetime passion, devotion, and obsession until this horrible disease is eradicated.”
John Letizia, ATP
Board Member, Board of Directors
“The reason I volunteer is because ALS hit someone close to me. My friend’s sister died from ALS and she was only in her 50’s. As I learned more about ALS and what a devastating, incurable disease this is, I wanted to do something to help in whatever way I could at the Western Chapter ALS office. Since I am retired, I feel it’s my responsibility to do something to help whenever they need my assistance. The staff does a wonderful job helping people afflicted with ALS, their families and raising money for research and and it makes me happy to volunteer my time to such a worthy cause.”
Martin Luther King, Jr. is quoted as saying, “Everybody can be great because everybody can serve.” The ALS community is an extension of my family, and I am inspired to be more and do more because of my involvement. I will continue to do everything possible—as a researcher, advocate, and volunteer—to make a positive impact in the lives of those I care for so deeply.
Christi Kolarcik, PhD
Board Member, Board of Directors
“My Grandpap, Richard Pisarcik, passed away from ALS in 1978 – 7 years before I was born. I grew up always wondering why I couldn’t meet my Grandpap. Instead, I only got to know of the man he was through stories from my Grandma and other family. Only when I was old enough to comprehend the circumstances that lead to his death did I realize that ALS was to blame for robbing me of the chance to get to know him in person. It was at this young age that I realized I wanted to do something to help prevent another kid from never getting to know a grandparent.
After interning for the Greater Philadelphia Chapter of the ALS Association in college, I found my way to Pittsburgh for law school. In Pittsburgh, I was able to meet my wife. After dating for one year, her mother, Angie Kazmeraski, was diagnosed with ALS in 2010. After a year battling the disease, she succumbed to ALS in July of 2011. Seeing first-hand the impact ALS has on an entire family further flamed my desire to help fight this disease to every extent possible. Our Pittsburgh Walk team, Angie’s Angels is named in her honor and memory.
I volunteer for my Grandpap. I volunteer for my mother-in-law. I volunteer for every family who has been impacted by this horrible disease. All we can do is fight to win against ALS. If I can add one iota to that fight, then I know my decision to volunteer was worth every second.”
Keith Pisarcik, Esq.
President & Chair, Board of Directors
Volunteers are the driving force behind The ALS Association Western PA Chapter. Our local chapter depends on the efforts of volunteers to support our many programs, including patient services and fund raising activities. To sign up for volunteer opportunities, call our office at 412.821.3254
I hope you are doing well. I want you to know that all of us at The ALS Association Western Pennsylvania Chapter are thinking of you and are here for you. As you are aware, the ongoing Coronavirus (COVID-19) pandemic has changed many things for the time-being, including how our Chapter of The ALS Association operates. Our main priority continues to be the safety and well-being of those living with ALS, their caregivers, and our volunteers and staff.
ALS doesn’t stop, and neither do we. We continue to dedicate ourselves to the mission of The ALS Association and serving the community with all Chapter staff working remotely. Although our office is closed, please know that you can always call our main line at (412) 821-3254 and use the staff directory to reach the intended staff person. Our offices are open from 9:00AM – 5:00PM Monday through Friday. If we do not answer right away, please leave a message and we’ll return your call as soon as possible. I also invite you to email me personally at firstname.lastname@example.org and I will help you connect with the appropriate staff member.
Below you will find more information regarding Chapter care services and events. These plans may change in accordance with CDC guidelines, but rest assured that we will communicate any changes in our operations to you. In addition to email communications like this one, we are regularly updating our Facebook, Twitter, and Instagram accounts.
The Care Services Team is working hard to continue serving individuals living with ALS in our region.
Here are a few things the Chapter is doing to continue services: • Virtual caregiver support classes • Modified equipment and supplement deliveries • Respite home care grants • Check-in phone calls • County-specific resources for food and other necessities
Based on the CDC’s latest recommendations, we have modified our spring event schedule. As we continue to monitor the rapidly changing status of COVID-19, we will provide updates regarding our events via email and on our social media channels. Please click here for the most updated event information.
We have received many messages from people wanting to help our Chapter and individuals living with ALS. We are continually blown away by the generosity of our community and wanted to share a few ways you can help during this time.
Make a Gift The programs and services that our community relies on are sustained by your generosity. We are grateful for your continued support.
Be an Advocate – Sign up for Action Alerts The actions of Congress have an immense impact on people living with ALS. It’s important that those leaders hear from you. Sign up here to become an online Advocate.
Register for a Chapter Event Our Development staff is available to help get your team registered, update your fundraising pages, and help you strategize to reach your fundraising goals this year.
Shop Amazon Smile Shop online through Amazon Smile and The ALS Association will receive a portion of your purchase amount. Visit smile.amazon.com, sign up or log in using your Amazon account, and select The ALS Association Western Pennsylvania Chapter as your designated organization.
Help us Spread the Word and Your Positivity! Follow us on Facebook, Twitter, and Instagramand like and share our important updates regarding our care services and events. And, if you have something fun and positive to share, tag our Chapter or reach out to our Marketing Team. There is a lot of negativity on the internet right now and we want to help dilute that by helping you celebrate birthdays, anniversaries, and the other positive things in your lives. HINT: Funny videos and pets always bring us joy.
Social Distancing We must come together by staying apart to do what is best for the health and safety of our communities and the world around us. We urge you to adhere to the CDC’s best practices in preventing the further spread of COVID-19 and to consider the impact on those currently living with ALS. Read our latest blog post for fun things to do while self-quarantining.
The ALS Association Western Pennsylvania Chapter is standing with you by continuing our mission to serve, advocate for, and empower our ALS community. Thank you for your continued support.
Ryan Reczek Executive Director The ALS Association Western Pennsylvania Chapter
We understand that self-quarantine and social distancing can take its toll both mentally and physically. Therefore, our Chapter Marketing team has compiled a list full of tips and resources to help keep you busy during this time.