Recap – Pittsburgh Walk to Defeat ALS® 

On September 10th, our ALS Community reunited in-person at Point State Park for the 30th anniversary of the Pittsburgh Walk to Defeat ALS®, presented by Mascaro Family Foundation! Everyone that joined us at Point State Park, and our teams that walked remotely, made the day one we will never forget. So far, the Walk has raised over $530,000, which is an incredible 96% of the event’s $550,000 goal!

As we all know, there is always more we can do in this fight against ALS. Fundraising for the Walk doesn’t close until November and there is still time to make a donation that will directly impact our ALS community.

Unlock ALS Honors the Real Reasons We Walk to Defeat ALS

Each year, tens of thousands of people come together at Walk to Defeat ALS® events across the country with one common goal: to remember treasured loved ones and honor those who are fighting ALS every day. Unlock ALS provides Walk participants with a tangible way to recognize the real reasons we Walk to Defeat ALS. At each Walk event, participants select a lanyard in one of four colors to represent their connection to ALS.

These colors represent:

  • Gold: I have ALS
  • Blue: I Walk in Honor of Someone with ALS
  • White: I’ve Lost Someone to ALS
  • Red: I Support the Cause and Want to Defeat ALS

2022 Walk to Defeat ALS Pittsburgh Unlock Representatives:

Brett Schoenecker from “Brett’s Brew Buddies” wears the gold lanyard as someone currently living with ALS.

Brett’s wife, Jeannine, wears the blue lanyard and Walk’s to support him in his fight.

John Finnell from “Tom’s Troopers” wears the white lanyard and walks in memory of Tom Gigliotti.

Our red lanyard representative, Becky Fortuna from Maxim Healthcare, wears her lanyard to support the fight against ALS.

Walk Day Contest Winners

Congratulations to our contest winners of the day!

  • Team T-shirt Contest – Brett’s Brew Buddies
  • Team Tent Decorating Contest – MMC – Marching for Lisa Mulroy

Find Your Walk Day Photos!

Want to relive Walk day? Click the link below to find all of the team and Walk day photos captured by our professional Walk photographers.

Download your team photo to share with your fellow team members!

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.

Executives raise over $270,000 for our ALS Community at 6th annual CEO Soak

On August 11th over 40 CEOs and business executives joined forces to raise an outstanding $273,000 (and counting!) for those living with ALS in western PA at this year’s CEO Soak, emceed by Bill Flanagan, community leader and host of the WPXI-TV program, “Our Region’s Business.”

2022 CEO Soak / PPG Fountain

Over the past few months, CEOs in the local business community rallied their colleagues to raise funds for our ALS community in anticipation for Thursday’s event. This included executives from presenting sponsor Hefren-Tillotson, A Baird Company, Oxford Development Company, and premier sponsor, Philips Respironics. In addition, some new faces joined the charge, including representatives from Maxim Healthcare, MGM Contracting, and Henderson Construction Fabrics.

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.

All funds raised by the CEO Soak provide help and hope for those living with ALS in western Pennsylvania by supporting patient care, advocacy, and cutting-edge research to find treatments and a cure for this debilitating, always fatal disease. In the 6 years since its inception, the CEO Soak has raised over $835,000 in western PA.  


Guest Speaker, David Flaugh gave a powerful speech thanking donors and soakees for their support of our ALS community.

Last month, Exchange Underwriters won a Make More Happen Award in recognition of their work with us, which came with an initial $5k donation. Thanks to them, and all your votes on our Make More Happen story, our donation doubled to $10K! Safeco Insurance and Exchange Underwriters presented the check during the pre-event reception.

Community leader and philanthropist, Anne Lewis, was presented with the Sarah W. Wood Advocate of the Year Award for her remarkable commitment to our ALS community that began when her stepson was diagnosed in 1999. For many years since, Anne has done work both in Harrisburg and DC to continue the state advocacy funding that supports both our Chapter and the Greater Philadelphia Chapter. Our Chapter is one of the few that is fortunate enough to receive state funding, and that is all because of Anne’s grassroot efforts.

For Platinum Sponsor, Philips Respironics, this year’s CEO Soak is special. The company joined the event in 2021 in support of friend and former colleague, Fred Abercrombie, who was diagnosed with ALS in 2019. As his disease progressed, ALS made Fred dependent on medical devices to assist his speech and aid in his breathing, including the Philips Respironics trilogy ventilator, which Fred himself helped to design and create. Unfortunately, Fred lost his battle with ALS in 2021.  

“He was our colleague. He was a warrior, a believer, and a champion in the fight against ALS.   Now, it is up to us to carry on his fight for the 5,000 new cases that are diagnosed every single year.”

Philips National Business Leader, Eline de Graaf

To contribute in honor of Fred, please visit the  Philips Team Page

Special thank you to event founder, Mike Daniels, for his countless hours of hard work to make this year’s CEO Soak a huge success!

Top Fundraiser

Top Fundraiser

Matt Henderson, Henderson Construction Fabrics

The Top Fundraiser for this year’s event went to newcomer, Matthew Henderson. Matt is the President of Henderson Construction Fabrics, the lead paving fabrics installer and distributor in Pennsylvania. After Matt’s diagnosis with ALS in November of last year, his community and network came out in full force to support him, which is evident by the over $28,000 he raised in just 2 weeks. Congratulations to our ALS hero, Matt Henderson, and his family on being the new Top Fundraiser of the ALS CEO Soak!

Photo Gallery

Click below to view our 2022 CEO Soak Photo Album. Stay tuned for more photos, videos, and coverage of the event.

Thank You Sponsors!

Inaugural National Partner

Recap: 2022 Walk to Defeat ALS® Johnstown

On Saturday, July 23rd, Johnstown Walkers gathered back in-person for the annual Walk to Defeat ALS® Johnstown, presented by Stoystown Auto Wreckers! So far, the Johnstown community has raised over $95,000 for those living with ALS in western Pennsylvania!

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 Johnstown 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 Johnstown Unlock Representatives:

Luke Kelly wears the yellow lanyard as someone who is currently living with ALS.

Laura Kelly wears the blue lanyard and walks in honor of her dad, Luke.

Phyllis Smith and team A Mile for Max wear the white lanyard and have been walking for 10 years in memory of Max Smith.

Anna Patsch, Chapter Development Associate wears the red lanyard to support the cause.

Thank you to the Johnstown ALS community for reuniting in-person with us and reigniting their fight to defeat ALS. We could not continue serving our families without your support and hard work.

And a special thank you to our wonderful Johnstown Walk Committee for their tireless efforts to ensure that this year’s in-person Walk went off without a hitch!

We can’t wait to do it all again next year! See you soon, Johnstown!

2022 Johnstown Walk Committee Members:

Sharon Squillario, Scott Steinkirchner, Carla, Ron, Jeremy, and Jenny Portash, Frannie Findley, June Kania, Sasha Kelley, Jan Goodard, The Lawn family, Tricia Barron, and Alexis Layton.

Don’t forget: It’s not too late to donate below to support our ALS Community and the Walk to Defeat ALS®!

CEO Soak Wins Make More Happen Award

Our friends at Exchange Underwriters, Inc have nominated our Chapter to win $10,000 from Liberty Mutual and Safeco Insurance! They’ve already donated $5,000, but now they’ve challenged us to rally our community to vote for our story.

If we get 500 votes by July 31, they will double that donation to $10,000! Let’s show them what our community is made of and VOTE, VOTE, VOTE!

A $10,000 donation from Liberty Mutual and Safeco Insurance would help to fund care, specialized equipment and home modifications for those living with ALS across western and central Pennsylvania. 

*How to Vote

There are two ways to vote:

  1. Click the blue VOTE button below and when directed to the voting page click the blue social media icons on the left to share to ALL of your social media accounts (Each social media account you share to counts as a vote towards $10,000!)
  2. AND scroll down to the bottom of the voting page and leave a comment.

You can vote on EACH social platform AND via comment once per device. That’s right: you can vote on ALL of your devices! (personal computer, tablet, mobile device, etc.)

*For the best voting experience: make sure your browser pop-up blocker is disabled. Your personal information will not be used, shared or sold for marketing purposes.

Click the button below to be directed to the voting page.

Recap: 2022 Walk to Defeat ALS® Erie

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®!

One Team. One Mission. One World Without ALS – A Letter to our ALS Community

To our beloved ALS Community –

Our Chapter Staff and Board of Directors are pleased to inform you of some exciting changes happening within The ALS Association. In May of 2021, all 39 Chapters of The ALS Association and the National Home Office of the Association launched a new strategic plan that set forth a bold goal – to make ALS a livable disease as we continue to work towards a cure.

As we looked internally and asked ourselves, “what changes do we need to make in order to reach this milestone?” a decision was made to modify our organizational structure in order to better coordinate the delivery of care and resources across our Association network.

Effective today, The ALS Association Western Pennsylvania Chapter has joined the unified ALS Association, moving from a federated chapter to join one single organization. One team with one mission. To support our team, we are now part of a Territory, one of ten nationwide.

This new unified structure is centered around local mission delivery, meaning our services will still be operating at the community level, just as they are today. We will be strategically aligned, fiscally efficient, and community-based. We will stay connected to our community by maintaining our office, staff, clinics, and volunteer networks, while continuing to build upon them.

Please rest assured that no changes will be made to what our Chapter provides, and the transformations we are making are in place to increase efficiency and coordination so that those living with ALS across the country can have access to the same level of care, no matter their zip code.


The ALS Association Staff (National Office)

Our Executive Director, Ryan Reczek, is now Senior Vice President, Development and will lead fundraising strategy nationwide for the organization.

Our Director of Marketing and Advocacy, Kelsey Moschetta, is now the Director of Territory Marketing & Communications. Kelsey will oversee and help strengthen all marketing and communications efforts in territories across the Association.

Territory Staff

Our new Territory Executive is a familiar face. Merritt Spier is the former Executive Director of our Chapter and is coming out of retirement to lead our Territory.

Our Director of Care Services, Marie Folino, MSW, LSW, has moved into the role of Managing Director of Care Services overseeing all care management for the Territory.

Our Chapter Director of Development, Kristi Marsili, has transitioned into the role of Managing Director of Development to lead the Territory’s fundraising efforts.

John Coyne, who comes from the Northern Ohio Chapter, will work alongside Territory staff and Chapter staff as Managing Director of Volunteer Engagement to provide an inclusive volunteer program that will engage volunteers in a more meaningful way. 

Alex Meixner, Managing Director of Advocacy, is also joining the Territory team. He brings years of public policy experience, most recently from The American Heart Association.

Rest assured, Marie and Kristi will remain an integral part of our local work and you will be in good hands with the familiar faces filling their shoes.

Western Pennsylvania Chapter Staff

Former Chapter Social Worker, Jill Kerr, MSW, has moved into the role of Director of Care Services for our Chapter service area.

Former Associate Director of Development, Amie Olson, has moved into the role of Director of Development for our Service area.

Jena McEwen, Sr. Development Manager

Danielle LaBruzzo, Marketing Manager

Kristin Keefe, MSW, LSW, Chapter Social Worker

Kate Karlovits, SLP, Chapter Speech-Language Pathologist

April Smith, Care Services Associate

Jim Gallagher, Administrative Manager


Brittany McCall, MSW, Chapter Social Worker

Anna Patsch, Development Associate

We know that this is a lot of change. However, it is change that will help us accomplish our bold goal of making ALS a livable disease. This is a turning point for our Association. One that will help us grow our support for the community that is so near and dear to each of us.

Please visit our FAQ PAGE or contact our Territory Executive, Merritt Spier, with any questions or concerns.

Together we will make ALS a livable disease,

The Western Pennsylvania Chapter Staff & Board of Directors

FAQ Page

Unification FAQ’s

Who made the decision to move to the new structure?

The decision to move to a unified structure was made by The ALS Association’s National Board of Trustees, which includes people living with ALS, a current caregiver, and those who have lost loved ones. It has been long in the making, informed by robust discussion and deep reflection. What has not changed – and will not change – is our commitment to put the people we serve at the forefront of everything we do.

What does Unified Structure with Distributed Mission Delivery really mean?
The strategic direction to build a unified Association was the result of efforts throughout the organization to find ways to work better together since 2007. As a unified structure with distributed mission delivery, we will be strategically aligned, fiscally efficient, and close to community.

Unified Structure means that the intent is to align ourselves as one collective organization that is strong, flexible, and connected.

Distributed Mission Delivery means that all the services that our community expects of us will be delivered at the community level, just as they are today. We stay connected to communities by maintaining offices, staff, and clinics, and building volunteer networks right where people are located.

What does “Whatever It Takes” mean?

We are on an urgent mission to make ALS a livable disease, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure. This decision was made by our Board of Trustees, which includes people living with ALS, a current caregiver, and those who have lost loved ones.

How will a unified organization better serve people living with ALS?

A more unified organizational model means enhanced depth and breadth of care, increased resources and capacity that will allow us to optimize our support to serving people with ALS and their families. Care will continue to be delivered with the same focus through our valued communities across our 34 chapters, one-to-one in this streamlined organization. This decision brings us closer together, unifies us in one direction, one pathway and one goal: to do whatever it takes.

People living with ALS and their families are at the center of every decision we make, today and always.

Our commitment to the people we serve is unwavering as we work to deliver on a promise to make ALS a livable disease and discover a cure.

Will ALS Association Chapters still exist?
ALS Association’s Chapters are and will continue to be vital part of the organization and services and care delivery. We want to reassure our entire community – people with ALS and their families, partners and clinics, and volunteers – of the organization’s ongoing commitment. Our daily work and focus on mission delivery will not change. The primary focus will always be on serving the needs of people living with ALS and their families. We highly value relationships with community organizations and clinics and look forward to continued and fruitful collaboration.

How will this change the services that The ALS Association Western Pennsylvania Chapter provides?

Services that The ALS Association provides to support people living with ALS and families will be maintained–and we will be making greater investments in care and research. Supporting our community is paramount – all the work we are doing now to support community will continue through this process. We anticipate being able to make greater investments in care in Western Pennsylvania and most importantly, research for a cure. Our Association is strong – we have the resources and the leadership to do this successfully and with minimal to no disruption to mission delivery.

How will unification affect those living with ALS and Caregivers?
Our Chapter is and always will be committed to our western PA community, and people living with ALS and their families are at the center of everything we do and every decision we make. The Chapter’s unification will mean preserving what is best in the service delivery while gaining traction and doing even more for the community and accelerating our mission in the areas of research and advocacy.

One of our greatest strengths is our connection with our communities and we will continue our work in and with communities like we do now. The care services staff will continue to carry on with their vital work and provide support, the development department will continue to plan our Chapter fundraisers and events and maintain our corporate partnerships, and our marketing team will continue to spread awareness and help us grow our ALS community.

Unification was a necessary step as we look to our goal of making ALS a
livable disease in the near future and work towards a cure. As a unified organization, we are identifying ways to ensure that every person living with ALS is able to access the services and care they need, no matter what zip code they live in.

How will unification affect volunteers?
Thank you to our amazing and dedicated volunteers for helping us enhance our mission to create a world without ALS. You will be integral in helping us achieve our ambitious goals and continued growth in services. It is truly your voices and talents that will assist us in shaping the future of this unified organization. Your role within our Chapter will remain the same as we count on our volunteers to make what we do happen. As we shift roles your contact on the staff may change, but we are dedicated to ensuring a smooth transition.

Please contact our Territory Executive, Merritt Spier, with further questions or concerns.

Clearview Federal Credit Union to Match Funds from ALS Allies during ALS Awareness Month!

May is ALS Awareness month and we need you to take action!

Our partners at Clearview Federal Credit Union want 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

Here is how you can help:

  1. Sign up to be an ALS Ally today!
  2. Like and share the video below to help us spread the word!
  3. Share your story of why you want to become an ALS Ally. Email your story to our Marketing Manager, Danielle LaBruzzo, at

The Benefits of Becoming an ALS Ally

  • Recognition in annual ALS Impact Report
  • Early access to important Chapter updates and breaking ALS news
  • Invites to exclusive conversations and VIP events
  • Signature “Creating a World Without ALS” Mug ($25+ monthly donation)

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.

Special thanks to our partners at Clearview Federal Credit Union for their generous support of our ALS community.

Team Challenge ALS Crushes $15,000 Goal!

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.

Team Member Shout Outs

Shout out to Colin Martin who offered up his expertise this year to create the first-ever training tip and tricks video series for members of Team Challenge ALS.

View the Marathon Training Video Series

Shout out to our 2022 Team Challenge ALS top fundraiser, Laura Kelly! Laura is running the half marathon and has raised a total of $6,040 so far in honor of her dad. Way to go, Laura!

Participating or volunteering during race weekend? Share your photos with us! Upload your pictures to our Team Challenge google drive

Special thanks to Old Thunder Brewing Company for being the official sponsor of Team Challenge ALS!

Chris & David Lynn: Care Keeps #ALS Families Together

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.

Chris and David Lynn

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.

Team Lynn, 2021 Pittsburgh Walk to Defeat ALS®

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.