On Saturday, June 18th more than 150 Erie Walkers gathered for the first time at UPMC Park for the second annual Walk to Defeat ALS® Erie! So far, our Erie community has raised over $38,000, blowing past our original $35,000 goal.
In keeping with tradition, we honored our four Unlock ALS representatives during the opening ceremonies. The Unlock lanyards are a tangible way to recognize the real reasons behind why we all Walk to Defeat this terrible disease. Each of our four Erie Unlock Representatives have joined our cause because they have ALS, have lost someone to ALS, are honoring someone currently living with ALS, or simply because they support any and all efforts to eradicate ALS.
2022 Erie Unlock Representatives:
Brad and Aimee McGarry: If you attended our Erie SeaWolves ALS Awareness Night at UPMC Park, you might recognize Brad as our special on field guest. Brad joins those who are currently living with ALS in wearing a gold lanyard. His wife and caregiver, Aimee, wears the blue lanyard in honor of those living with and battling ALS daily.
Stacy Schwalbendorf and Urban Behringer: Stacy wears the white lanyard in memory of her husband Lou, while Urban walks in Memory of his wife Cindy. They represent all of the Walkers who wear the white lanyard in memory of their loved ones who have lost their battle with ALS. Extra thanks to Stacy and Urban for serving on our Erie Walk committee and making the day so special.
Lisa Marcello: Lisa, from silver sponsor, Amylyx, wears the red lanyard to support the fight against ALS and to do whatever it takes to help our community.
We want to send a special thank you to the Erie ALS community for making our first in-person walk such a success. We could not continue serving our families without their support and hard work. We can’t wait to do it all again next year! See you soon, Erie!
Don’t forget: It’s not too late to donate below to support our Erie ALS Community and their first in-person Walk to Defeat ALS®!
May is ALS Awareness month and we need you to take action!
Our partners at Clearview Federal Credit Unionwant to help do “Whatever it takes” to raise critical funds and awareness for ALS. To do this, they are stepping up for our ALS Allies monthly giving program and are matching all funds from new ALS Allies that register this month!
“At Clearview Federal Credit Union, our Clearview Cares program allows us to engage and invest in the betterment of our local community. When we learned that every 90 minutes someone is diagnosed with ALS and every 90 minutes someone passes, we knew we had to put our care into action. Please join our efforts today by watching and sharing the video in the blog post below. We will be a stronger force together.”
Ron Celashchi, President & CEO, Clearview Federal Credit Union
Already an ALS Ally but still want to show your support?
Any current ALS Ally that increases their monthly donation will also have their funds matched. That means your May donation will be automatically doubled! Please also consider sharing our video to help us grow our army of ALS Allies.
Marathon weekend is finally here for Team Challenge ALS participants, who have spent the last several months training and raising funds for our ALS community.
Between April 30 – May 1 all fifty four members of this year’s team will connect their passion with purpose by participating in various Pittsburgh Marathon events through the Run for a Reason program. Events include the Full Marathon, Half Marathon, Marathon Relay, 5K, Pet Walk and more!
So far, this year’s runners have blown the original $15,000 fundraising goal out of the water, coming together to raise over $26,000 for ALS! Community members looking to support the team can do so with a donation or by volunteering on race day at the ALS Association fluid station.
My name is Dave and I have been happily married to my wife, Christine (Chris), for 49 years. We have three beautiful daughters, three wonderful sons-in-law, and seven grandchildren. Just as we were planning to transition into retirement and enjoy our golden years together, Chris was diagnosed with ALS. At that moment I took on a new full-time position, as her caregiver.
Before ALS, we knew very little about the disease and what to expect. I thought I was going to have to do a lot of research on my own and figure things out, but then we found our local ALS clinic and were connected to The ALS Association Western Pennsylvania Chapter. It was then that we realized that there are great people out there that want to help.
When Marie from the Chapter, found out my wife had Bulbar onset ALS, she encouraged us to do voice banking. We are now grateful that we have Chris’s voice on her speech device. When Chris transitioned to a wheelchair, which was provided to us through the Chapter’s Equipment Loan Program, we weren’t sure how we were going to get anywhere because we did not have a wheelchair accessible vehicle. The Chapter stepped in and connected us with free transportation to our medical visits. And when Chris was starting to have trouble swallowing, our care team suggested a feeding tube and a cough assist machine. This proactive care saved her life and has allowed her to be home with me and not in a care facility.
I was also invited to attend a course offered by the Chapter called Powerful Tools for Caregivers. This 6-week program helped me understand what was ahead of us and gave me the tools to be a better caregiver. I have since fully immersed myself into my wife’s care and some of our doctors even call me, Dr. Dave now.
With Chris’s bulbar onset ALS, her voice was beginning to weaken. We learned about the paperless tablet at the class and got one from the Chapter right away. This was a life saver. We were able to communicate with each other again.
“We were not as far into our journey as others in the class were, but I was given tools to help prepare myself mentally for the big changes we had ahead of us.”
We have been very fortunate with the care that we have received. It has allowed my wife to stay safely at home with our family and enjoy our time together.
The ALS Association Western Pennsylvania Chapter offers a full range of services to guide and assist those living with ALS and their families. The pages within the Patient & Family Services section of their website offer a wide range of information for patients, caregivers, family members, friends, and healthcare workers. To register with the Chapter for services, support, and to ensure you receive updates on our educational programs, please call Marie Folino at 412-821-3254 or 1-800-967-9296, or click here fill out the Chapter registration survey online.
If I were asked “Why contribute to ALS?” I would say that a contribution to the ALS Association allows researchers to move forward and find a cure for this insidious disease, and help fund our local association that does so much to support families living with ALS.
What if one day you woke up and could not speak? How would you communicate?
For our family, this cruel situation became a reality when ALS took Fred’s voice. The action of sharing a thought, need, or simple greeting became a daunting task for him.
The ALS Association Western Pennsylvania Chapter helped us through this challenging transition by providing encouragement and support. In addition, the Chapter provided speech devices, consultations with Speech-Language Pathologists, and guidance.
As a Speech- Language Pathologist, Kate Karlovits provides tools to those living with ALS so that they can have a voice. By giving a person the ability to speak, those like Fred are empowered to advocate for themselves and live their lives to the fullest.
People with ALS often experience frequent communication breakdowns. During this video, you will learn how Fred was put into a very frightening situation because he simply could not communicate his own health risks in the emergency room. This is an extreme example but demonstrates how important conversation can be.
For many, this time of year is all about connecting. This is especially true as Fred and I interact with others to enjoy the traditions of the holiday season. Connecting with our families, friends, and communities makes us who we are and fills our lives with meaning and belonging.
The ALS Association understands how important it is to connect with one another, which is why they make it a priority to provide a voice to those living with ALS. The following video shows how their services help connect ALS families so they can continue sharing those special moments in life.
You have heard various stories from me and my husband Fred about how his speech-generating device allowed him – us – to continue living our lives even with an ALS diagnosis. You learned about our new dog, Ellie, how Fred connected with his old Navy buddy, and his debut in the fountains for the CEO Soak with former coworkers from Philips.
We were happy to share our ALS “ride,” but I am sorry to share that our ride has ended. Fred has passed away from ALS. He was the love of my life, and I will miss him dearly. I’m glad you all got to see how he persevered in the face of his diagnosis. It was our wish that the Chapter continue to share his story and bring funding and awareness to this terrible disease.
The last video that we have to share shows how providing a voice to communicate, empower, and connect are all things that make a person whole. Having a voice made Fred feel like himself, even though ALS took so much from him.
We want to thank The ALS Association Western Pennsylvania Chapter for all they did to help us through this diagnosis. We are grateful for all of the assistance we received. If you are able to give this holiday season, I would encourage you to make a donation today to help provide a voice to other families like ours. The last few months we had together went quickly, and I couldn’t imagine doing it without Fred’s voice.
This holiday season, we are asking you to help provide a voice for those living with ALSby donating to ensure that ALS families have access to speech devices, consultations with Speech-Language Pathologists, and more. Not able to donate at this time? Share your voice so those living with ALS can keep theirs.
*The ALS Association Western Pennsylvania Chapter’s annual Impact Report covers finances, programs, and event highlights. Please read and share with those that want to learn more.
Each year, The ALS Association Western Pennsylvania Chapter releases an annual Impact Report to recognize the Chapter’s accomplishments and changes, while simultaneously highlighting a few members of our local ALS community.
In the 2021 report you’ll find recaps from this year’s major events, care services spending highlights, the latest in ALS research developments, general staff and board information, chapter financials, and more! Plus, you’ll learn more about those in #OurALSCommunity who are making an impact through advocacy, fundraising, and providing services to better the quality of life for ALS families.
This edition’s featured story focuses on an essential aspect of daily life for those living with ALS – communication. Providing a Voice to those living with ALS by funding speech generating devices and professional services, such as evaluationsfrom a licensed Speech Language Pathologist, allow families like Fred and Sandy Abercrombie to feel connected and understood through the power of communication tools.
On September 11th, our Pittsburgh ALS Community participated in the annual Pittsburgh Walk to Defeat ALS®. Teams gathered from near and far to walk “their way,” and helped raise over $512,000 to Unlock ALS!
Watch the full recap video below or on our YouTube channel:
While over 700 walkers were walking “their way,” various staff members popped by to join in on the fun and celebrate this year’s Top Teams!
Executive Director, Ryan Reczek and Director of Marketing/Advocacy, Kelsey Schooley spent their day dropping in to see “Team Duty,” “Bobby K’s Brigade,” and “Brett’s Brew Buddies.”
Team Duty gathered at Birchfield Elementary School to walk in honor of Dan Duty. After taking a lap around the school, friends and family reunited for cookies while the kids used sidewalk chalk to show their support.
Bobby K’s Brigade, who walks in honor of Robert Kleinedler, kicked off the day by live streaming opening ceremonies on a large projector screen in Bobby’s garage. Following the ceremonies, over 50 friends and family watched as Bobby cut the ribbon and walked throughout their neighborhood toting their customized team banner prize! After their Walk, the team returned back home for breakfast and photos.
Brett’s Brew Buddies celebrated two momentous events on Saturday – their annual Walk in honor of Brett Schoenecker, and Brett and Jeannine’s 25th wedding anniversary! After walking the streets of Blawnox (with a police escort!) the team headed over to Old Thunder Brewing to celebrate the couple with cake, a raffle, and of course, some good brews!
Director of Development, Kristi Marsili, and Development Manager, Amie Olson made their way up north to visit “Team Geniviva – The Iron City Horses,” “Team David Calve,” and “#TeamEDOO.”
Team Genivia – The Iron City Horses gathered at Ewing Park in Ellwood City in memory of John Genivia. John’s hometown served as the perfect location to gather family, friends, and lots of dogs for a fun time, lunch courtesy of Pittsburgh Fresh, and great Walk.
Just across the park, Team David Calve pulled together an impressive group for their 20th anniversary team walk! Team Calve walk to bring awareness to familial ALS which took the lives of several family members including, David Calve and his sister Barb Young. Team Captain, Sarah Calve, led the large group with a motivating and heartfelt speech into their walk. Along the route, Team Calve picked up the Iron City Horses to walk as one in the fight to defeat ALS.
#TeamEDOO came out in force to support the Zeigler family just one week after their ALS hero, Ed, lost his battle. This group, led by team captain, Taryn Bartolicius, and full of family, friends, and church members lifted up this strong family and showed their support by raising an additional $8,000 that day through an incredible basket raffle!
Development Manager, Jena McEwen, and Marketing/Advocacy Associate, Danielle LaBruzzo also joined “Team Zawk,” and “Team Father Dennis” for their Walk day festivities.
Team Zawk gathered at McBride Park to Walk in memory of Brian “Zawk” Zawasky. Instead of a traditional Walk, Brian’s brother Mark gathered a group of family and friends who grew up playing hockey at the park for a tournament to honor Brian’s memory. In addition to the games, guests were treated to Barbeque, raffle prizes, and breakfast, courtesy of State Fair mini donuts!
Team Father Dennis started their Walk Day with their annual mass held at Light of the World Church in memory of former priest, Father Dennis, who lost his battle to ALS in 2015. Following the service, the congregation walked and returned back to the church for lunch, a basket raffle, and snacks provided by Pittsburgh Fresh!
And last, but not least, staff stopped by to say hello to our top fundraiser, Team“Ewonce’s Army” on Sunday morning. The team of family and friends met at the Cider House at Treesdale Country Club for some pre-walk donuts donated by Dunkin Donuts. Following breakfast, the team walked two miles around the park at Treesdale Commons and then enjoyed snacks and hot dogs during an afternoon of corn hole, tailgating, and watching the Steelers.
Thank you to everyone who shared their pictures to our Google Drive or uploaded them to Facebook. And thank you to all who participated and fundraised to support our ALS community. We are truly all in this together as we continue to raise funds, spread awareness, and support ALS families in western Pennsylvania.
On August 12, 2021 over 50 CEOs and business executives joined forces to raise an outstanding $242,000 (and counting!) for those living with ALS in western Pennsylvania.
This year, twice as many CEOs lined up to be called out one by one and take their place in the fountain. This included executives from long-time partners Hefren-Tillotson, Oxford Development Company, Laurel Medical Solutions, and the Pitt Panthers Men’s Basketball team. In addition, some new faces joined the charge, including representatives from Dollar Bank, Jones Day, MSA, and Philips.
Honorary event chair, and Hefren-Tillotson President Don Belt, raised over $47,000 this year in honor and memory of his friend and coworker Neil Alexander, who passed away from ALS at the age of 49. In the past five years, Hefren-Tillotson, the presenting sponsor of the ALS CEO Soak, has raised more than $100,000 for the event.
“I am participating because products and solutions for ALS families is not yet enough. We need more – we need better care. We need a cure. And so we are here to support that effort.”
— Eline de Graaf Business Leader | Sleep & Respiratory Care North America | Philips
In total, over $557,000 has been contributed since the event’s inception in 2017, helping more than 350 individuals and families living with ALS in western Pennsylvania.
This year’s Soak even had some special guests! Fred Abercrombie has been living with ALS since 2019. But even before his diagnosis, Fred was helping the ALS community through his work with Philips on the Trilogy Non-Invasive Ventilator, a device that many people with ALS use to assist their breathing. When Fred heard that his former coworkers were going to be at our Chapter’s ALS CEO Soak this year, he came to show his support and thank them.
In addition, Brett and Jeannine Schoenecker took the stage to share their personal ALS journey, thank participants, and speak about how the money raised is used to benefit our ALS Community.
Thank you to all who participated and fundraised for this year’s ALS CEO Soak. Our Chapter is overwhelmed by the outpouring of support, dedication, and generosity.