Recap – Johnstown Walk to Defeat ALS®

On July 24th, our Johnstown ALS Community held their 16th annual Johnstown Walk to Defeat ALS®. Teams gathered from near and far to walk “their way,” and came together to raise over $82,000 to Unlock ALS!

Here’s how a few members of #OurALSCommunity spent their walk day…

Team Phyllis and Team Rick Husband joined forces to cut the first ribbon of the day at Crichton McCormick Park and walked in memory of Phyllis Connelly and Rick Husband.

Team For Pete’s Sake walked at Engh Field and honored Pete Duranko’s memory. Then they shared a sweet treat with an assortment of baked goods.

Team John got the whole gang together at the family homestead in Lilly to walk in memory of John Conrad. Led by their patriarch, John Francis Conrad, the family walked around their neighborhood and then headed back for a picnic style lunch and the best chocolate and banana gobs around!

Team ALStriders for Clara felt like a family reunion walking around Clara’s sister’s neighborhood in memory of Clara Pearce. Complete with cute dogs, sidewalk chalk, and great treats. This Polish family knew just how to Walk to Defeat ALS!

Over at Revloc Park, team Ronnie’s Rangers held their annual walk and basket raffle raising over $2,025 for their team. After walking, the team enjoyed an assortment of picnic foods and announced the winners of over 25 baskets!

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.

If you haven’t yet, please upload your photos to our Google Photo Drive!

2021 Recap Video

Celebrating the First Ever Erie Walk to Defeat ALS®

On Saturday, June 26th, our Erie community came together to kick-off the first ever Walk to Defeat ALS® in the area! As teams gathered to walk “their way,” Erie rallied behind the motto, “We are #ALSInThisTogether,” and came together to raise over $31,878 to Unlock ALS, blowing past the original $20,000 goal set for the event!

Cindy’s Crusaders kicked off the walk Your Way in Erie by walking on May 16th in memory of their beloved Cindy, whose birthday is May 17th. The team walked with close family and friends along a local walkway. Alicia, Team Captain said, “It was the first time a lot of us had been together in over a year which made it special.”

On Walk Day, Director of Development, Kristi Marsili and Development Associate, Jena McEwen drove up to Erie to join in on the fun! The duo kicked off Walk Day with Team FUNctional, made up from staff members of UPMC, Centers for Rehab Services. The team gathered in the morning at Presque Isle and enjoyed a walk through the park!

The crew then headed over to Team Bond’s Walk for the ribbon cutting of our 1st official Erie Walk to Defeat ALS®! Team captain, Karen, and the rest of Team Bond took Jena and Kristi on a walk through the woods and then enjoyed a homemade lunch. The afternoon was filled with family, friends, and so many laughs.

But they weren’t done yet! The duo made their way over to Team Dan Tastic to wrap up the day! Dan and Judy rode on an ATV as they led their team through a maze of a Walk route! The team then gathered for a backyard picnic and fun.

At the end of the day, they were absolutely exhausted and ate way too much good food, but Erie teams really know how to have a good time!

Thank you to everyone who shared their pictures to our Google Drive or uploaded them to Facebook, including Rally for Ron’s beautiful tribute to their loved one and Lou’s Team “Can Do” walking from the shores of Lake Erie all the way down in Florida.

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.

If you haven’t yet, please upload your photos to our Google Photo Drive!

And Thank you to our Outstanding Sponsors!

*Special shout out to Cindy Glass and her t-shirt shop, Silk Screen Unlimited, for their support.

Erie, PA Residents Help to Unlock ALS at First Annual Erie Walk to Defeat ALS®!

Today, we are excited to celebrate as our Erie Walk teams gather and host their own mini-walks for the first annual Walk to Defeat ALS® in Erie, PA!

In keeping with tradition, our Unlock ALS lanyards are a tangible way to recognize the real reasons why we all Walk to Defeat this terrible disease we call ALS.
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 this disease.

Read their stories below as we honor them today:

If you followed Lou Gehrig day, you might recognize Dan as our special on field guest. Dan received a brand new power wheelchair that day and it couldn’t have come at a better time. Now Dan has the freedom to explore his beautiful country property, visit his kennel dogs and hunting camp, and enjoy the serene parks along the Erie peninsula. Dan wears the gold lanyard to represent and inspire those living with ALS. 

Judy is not just a sister of a loved one living with ALS, she is a dedicated caregiver and support person for her brother, Dan. She is the team captain of Team Dan Tastic and led her team in their first year walking to an incredible fundraising goal. Judy planned a fun event for Dan, their friends, and family. On top of a great Walk day, she helped to raise over $5,000 and connected with WJET in Erie to encourage others to join the fight against ALS at the Erie Walk. Judy is a loyal sister, leader, and advocate. Today, Judy joins all those wearing a blue lanyard in honor of those living and battling ALS daily. 

Karen and Team Bond walk in memory of their beloved husband, father, and friend Michael, who passed from ALS in 2018. Karen was an incredible wife and caregiver to Michael and continues to be a guardian to our community through her generous contributions and commitment to connecting with others that know this battle all too well. Karen is a trusted confidant to so many families and carries their stories to our state and national law makers to advocate for a cure for ALS and the support of the ALS community. Today, Karen joins all those who wear the white lanyard to remember their loved one they have lost to ALS. 

Interim HealthCare has always been a strong supporter of our ALS community and a big part of that is due to the leadership and dedication of our friend, Mary Beth Lombardi, Regional Sales Manager at Interim HealthCare. Whether it is braving the cold at the annual All in for ALS football game at Mercyhurst, finding caregivers for ALS families, or partnering for fundraisers in the Erie area, Mary Beth is always willing to do what she can to help. Today, Mary Beth wears the red lanyard to support the fight against ALS and to do whatever it takes to help our community.

Erie! Are you ready to Walk to Defeat ALS®? It’s as easy as 1…2…3!

  1. Watch our Opening Ceremonies below at 10AM!
  2. Share your photos with the community by tagging the Chapter on social or uploading your special Walk day moments to the Walk Google Drive
  3. Check out our Spotify playlist for Walk day tunes

Don’t forget to donate below to support our Erie ALS Community and their first Walk to Defeat ALS®!

ALS Awareness Month: ALS Share-A-Thon!

With the help of Clearview Federal Credit Union and Pitt Athletics, The ALS Association Western Pennsylvania Chapter will be sharing ALS facts on social media during ALS Awareness Month. If we reach 250+ “shares” of these Share-A-Thon posts, Clearview Federal Credit Union will donate $2,500 to the Chapter!

This partnership all started when Fred, a person living with ALS, entered the Chapter into a Clearview Federal Credit Union contest last year. His heartwarming video won $1,000 for the Chapter and Clearview has supported us since. As a partner of both the Chapter and Clearview, bringing Pitt Athletics on board was an easy choice. Together, we hope to spread ALS Awareness far and wide with the ALS Share-A-Thon.

Share our posts on

Clearview Federal Credit Union

Why did Clearview Federal Credit Union choose to support The ALS Association?

Our vision at Clearview is “Helping People to Enjoy a Better Life,” and is what we live by and is the core of what we do with respect to our members, staff, and the community. This is in line with everything The ALS Association does every day – they strive to help provide a better life for those battling ALS. We are proud to be a part of these efforts and help raise awareness about ALS.

How are your employees/members spreading ALS Awareness?

As a new partner with The ALS Association of Western PA, we wanted to find a way to financially support the organization while utilizing our platforms to help raise awareness about ALS. Our teams worked together to find a way to accomplish this, and the ALS Share-A-Thon was born! We look forward to this event to share information with our community about ALS and to continuing this momentum with our participation in the upcoming CEO Soak.

What is your goal in supporting the ALS Share-A-Thon?  

Our goal in supporting the ALS Share-A-Thon is to continue raising awareness and providing funds to help The ALS Association of Western PA continue its mission to discover treatments and the cure for ALS and serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Share about Clearview’s values pertaining to community support.

 As a community  financial institution, we’re firmly rooted in the practice of helping our neighbors. Clearview supports the community through our Clearview Cares program that encompasses everything Clearview does in the community. This includes donating time, money and items to those in need.

Pitt Athletics

Why is Pitt Athletics and Pitt Men’s Basketball involved in the fight against ALS?

The Capel brothers and the Pitt Men’s Basketball team fight for their father, Felton Jeffrey Capel II, who was diagnosed in 2014 with ALS, and unfortunately passed on November 13, 2017 from the disease.

Pitt Panthers head coach Jeff Capel III, stated in his 2017 Players Tribune article,

Throughout my whole life, I’ve learned the importance of teams. Growing up, I was always around my dad’s basketball teams, and my own. And it’s because of the best team I’ve ever been on — the one of my dad, my mom, my brother and me — that I’ve become the man I am today. Now, the four of us are joining another team: the millions around the world fighting to find a cure for ALS. This is the biggest challenge we’ve ever faced, but we’re ready to face it the only way we know how: as a team.”

Jeff Capel III

31 Ways in 31 Days – How You Can Get Involved During ALS Awareness Month

May is #ALSAwareness Month! 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.

Here are 31 ways you can take part in ALS Awareness Month:

  1. Sign up to be an ALS Advocate
  2. Host a fundraising event
  3. Share this blog post and follow our Chapter Blog
  4. Follow us on Twitter
  5. Share your ALS story
  6. Become a volunteer
  7. Register for a Walk to Defeat ALS near you
  8. Subscribe to our YouTube channel
  9. Join Team Challenge ALS and participate in the Can’t Stop Won’t Stop Challenge
  10. Participate in the PA State Advocacy Day of Action on May 12
  11. Attend the lunch and learn advocacy info session on May 11
  12. “Like” and Follow us on Facebook
  13. Sign up to receive our chapter newsletter
  14. Join our planned giving program to: Leave a legacy and include our Chapter in a planned gift. Already have us listed as a beneficiary? Let us know!
  15. Get your ALS swag from our Swag Store
  16. Connect with us on LinkedIn
  17. Listen to the ConnectingALS podcast
  18. Attend our Caregiver Support Group
  19. Attend the new Living with ALS Meeting *only for those diagnosed with ALS
  20. Listen to this month’s Care Services Webinar
  21. Double your fight by asking if your company has an employee matching gift program
  22. Nominate your boss to participate in this year’s ALS CEO Soak
  23. Follow us on Instagram
  24. Become an ALS Social Media Ambassador
  25. Share an ALS facts post during our ALS Share-A-Thon – find these on Facebook and Instagram throughout the month of May!
  26. Attend the Walk to Defeat ALS kick off on May 15
  27. Donate to support the fight
  28. Become a corporate partner
  29. Start a Facebook fundraiser
  30. Participate in Youth Action Day on May 15
  31. Become an ALS Ally – $25 gets you a mug!

Here are some more ways you can help:

Educate

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.

Share

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)!

In addition, you can stay up to date by following us on Facebook , Instagram, and Twitter.

Donate

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.

National Volunteer Month – Thank You Volunteers!

The contributions and impact of our volunteers is invaluable. From helping with event setup and logistics to mailings from the office, volunteers play an essential role to drive our mission forward. National Volunteer Month is an opportunity to recognize the impact of volunteer service and the power of volunteers in #OurALSCommunity. This year, in celebration, we asked volunteers to let us know why they offer their time to help those with #ALS. Here’s what they had to say.

“I volunteer for the ALS Association of Western PA because when my friend/co-worker (and Veteran) Melissa was diagnosed in 2016 at the very young age of 35, I knew I had to help somehow.  I am beyond sad to say that Melissa lost her battle at the end of November 2020, but I will keep volunteering and fighting for a cure because I know she would want me to continue so that others (especially Veterans who are twice as likely to get ALS)  do not have to suffer with ALS.  The staff at the ALS Association of Western PA are awesome and I feel lucky to know them and now call them my friends.  I live the volunteer spirit and I encourage others to volunteer for the ALS Association or another organization that you feel passionate about.  You always get more than you give when you volunteer!”

Karen Dunn

“When you go through a difficult period in life, you remember those that were there to hold you up throughout that time.  The ALS Association never left our side when my mother in law was living with ALS. They gave so much to my family, especially my mother in law, and  we will never forget all that they’ve done.  That is why we spend any time we can, helping them support those currently living with ALS.”

Amy Shaughnessy

I volunteer because I’ve seen the cycle of ALS, I’ve witnessed the impact the support that local ALS chapters have on those battling the disease, and I want to be a part of the organization that works tirelessly to develop treatment that not only allows people to live with ALS, but rids this world of the disease entirely.

Gregory Allison

I volunteer for three main reasons. One, to ALWAYS honor my step mom Jackie and raise awareness. Two,  l enjoy volunteering meeting new people and raise awareness. Finally,  l do it to support my dad, my best friend.

Alexis Freoni

I volunteer because I just want to see an end to ALS.  If I can give some of my free time to allow those living with ALS, as well as their caregivers, to have a glimpse of a future without having to battle every day of their life, then it will be worth every minute.  I volunteer to give speech to those who can no longer speak, a deep breath of air to those who cannot breath without assistance, a long walk to those who cannot walk on their own.  Every minute truly counts.

Sharon Squillario

I volunteer with the Western PA Chapter of The ALS Association in honor of and in memory of my father-in-law, F. Jeffrey Capel, Jr. who battled ALS until his last breath in November 2017. The ALS Association served as an amazing resource and support service for our family as we cared for him. Giving a few hours of my time each month is a small “thank you” in return for all the association has given to my loved ones.

Ashley Capel

“I volunteer because if you knew my mom, whom I walk for, you would know that volunteering is all she ever did. She was always doing for others, whether it was for the church, her friends, girl scouts or driving kids to baseball games. She never stopped being generous with her time while raising 7 kids.”

Carla Portash

Are you interested in volunteering with The ALS Association Western Pennsylvania Chapter?

Message from Surviving Spouse, Patty Letters: “We Can Look Back with No Regrets.”

The day my husband, Bob, was diagnosed with ALS he thanked my son and I for keeping it together for him. We did just that until the end. Now, we are able to look back on our ALS journey and have no regrets. During our three year battle, The ALS Association Western Pennsylvania Chapter gave us guidance and provided the tools we needed to live our lives and make lasting memories. That is why I am and will continue to be an ALS Ally.

The Letters Family

Our journey with The ALS Association Western Pennsylvania Chapter began when we attended our first symposium. When we arrived, we were scared and still in shock. After receiving information from a few speakers regarding many aspects of ALS, Marie Folino (Director of Care Services) came over and assured us that we would never be alone in this journey. Marie was so very instrumental in guiding us through the first steps we needed to take. She asked if Bob was a veteran and advised us to contact the VA for more resources. After that we would see Marie at the ALS clinic and she continued to be a wealth of information.  

Then I met Meghan, another social worker at the Chapter that helped with the support groups. Meghan was compassionate, caring, and she ran an awesome meeting. The caregivers support group was a game changer for me. That group is the reason why I have no guilt and no regrets. It was the best thing I ever did. I took away so much from these meetings by sharing my story, listening to others, learning from others, and grieving with others. The ALS Association gave us a community of people who understood. 

No question was too small or too big, and Meghan always let everyone weigh in on the conversation. ALS is such a personal journey. Sharing with others is difficult, but this group was my lifeline. I made some wonderful friends. These friends helped me realize just how important self-care was at the Chapter’s Caregiver Appreciation Weekend. This was a time where I could leave ALS at home and not feel guilty about it. I was able to relax and recharge to ultimately be a better caregiver. 

In addition to supporting me as a caregiver, The ALS Association greatly supported my husband. They gave him the tools and courage to fight, and he did every day. Our lives were filled with fun, love, and laughter before ALS, and we didn’t let ALS take that away. In September of 2020, Bob started to decline, and we were told he probably only had six months to live, if that. We embraced every minute. We started a weekly family dinner so our kids and grandkids could spend as much time with Bob as they could. We had many “last moments” that brought such love and joy to the very end. Bob fought hard for his family.  

With the equipment and resources, The Association took the emphasis off the outcome of the disease and focused on what we could do in the present. They kept our family motivated with the Pittsburgh Walk to Defeat ALS®, fundraisers, and inspiring events.  

Fundraising has given all our family and friends a chance to be a part of this fight to stop ALS. Everyone got involved and felt they were apart of Bob’s battle. We are the Go Getters for Bob Letters! 

Even though Bob’s battle is over, our family will forever be a part of the ALS community and help others in any way we can. It is my hope that no one will have to experience this brutal journey in the future. This is why I will always be an ALS Ally. 

Patty Letters, ALS Ally

By giving monthly I can ensure other caregivers are receiving the same tools that our family received to enjoy their lives together. Whether your loved one needs a wheelchair to go on a family vacation or you need assistance with in-home care, or you need a support group to vent or cry with, The ALS Association can help. The ALS Association looks at the care for the whole family, not just the person living with ALS.  

Please join me today, as an ALS Ally, to continue providing support to other families in need. My family and I are very fortunate to have had the time we had with Bob. Help us give tools and time back to other families.  

Give $25 or more/month and receive the same mug I am holding above.

#OurALSCommunity – A Network of Support

Recently, we asked the ALS community, “Why is it important to you to fundraise for our Chapter?,” and your response was incredible.

In reading your responses, we saw just how giving, compassionate, empathetic, determined, and willing to help #OurALSCommunity is.

We all fundraise for different reasons: to honor those currently battling ALS, in memory of those who have lost their battle, or simply to support the fight to end this devastating disease. Yet, we are all determined to do one thing: fight together to help find a cure so that another family doesn’t have to experience ALS.

Our Chapter provides support with resources and guidance, but the most valuable “resource” that we can give is the opportunity to connect families and rally our community to show that we are #ALSinThisTogether. This sense of unity gives us hope, drive, and direction as we fight to end this disease.

“I lost my wonderful, hard working, loving dad to ALS. I will keep fundraising and walking so that another child never has to experience the heart ache of losing their dad to this disease.”

– Cathlynn DAmbrosio

“Even after my dad’s passing we continue to be involved. We will always attend the walk and fundraise to help support the chapter.

After my dad was diagnosed the chapter helped us in so many ways. The help we received from the ALS clinic was amazing. In one visit we saw all the special area medical personal that we needed. The Association helped to get us adaptive silverware when needed as well.

The most important thing they gave my dad, my mom, and myself was love and support. They touched base with us on a regular basis with phone calls and messages. They offered classes to help us cope with what was happening and to heal our minds and hearts. They offered a wonderful, well needed, caregivers weekend away that let us make lifelong friends with other people who were part of the ALS family but made us realize that we are people and sometimes it’s ok to take care of ourselves. The Association became like an extended part of our family.

Even after my dad passed away, the Association continues to reach out to out to us. I don’t know what we would have done without the love, care, and support the Association has shown and given us. I will continue to always fight for a cure alongside them every day!” 

“I lost my favorite teacher to ALS. I had never heard of ALS before he was diagnosed – & I think bringing more awareness to the disease will be beneficial for so many reasons!”

– Ciara Walter

Rachel Tocco 

“My mother has been living with ALS since 2010 and the Western PA chapter has been a great source of support for our family. Not only with physical resources but emotional support as well. Supporting the Walk and fundraising is one way I can feel like I’m doing something to help. I live 300 miles away in Michigan and can’t be helpful to my mom on a daily basis so this makes me feel useful!”

Michelle Boring 

“I lost my mom to ALS in 2005 and have been the team captain for For the Love of Lee for the Johnstown walk since it started that same year. I usually send a letter or email to family and friends asking to participate and/or donate. One of the last things I tell them is that no amount of money can bring my mom back, but by raising money and awareness, hopefully one day there will be an end to ALS and prevent other families going through what mine did and watching my mom lose her battle to this horrible disease.”

“ALS took the life of the absolute most important.. influential.. heroic and angelic person in my life.. my mom!! And there is not a day.. an hour.. or a minute that I don’t miss or long for her. It has been 28 years and I cannot say the hurt .. or the headache gets any easier with time. Moms diagnosis was familia ALS, yet she never knew her birth family until after getting her diagnosis. Connecting with her birth family in a very odd, but definitely Gods plan .. his way! My family has walked in the Pittsburgh Chapter Walk every year.. since is inaugural year. I even pushed Mom in her wheelchair that first year. ALS is a horrid disease that needs so much attention and research! I.. along with my children and my family will walk.. donate and promote every ALS event until a cure is found.. or my last breath is taken!! #alssucks121692 ” – Lynn Glass Schwartzmiller

Melissa Lee DeMarco 

“I lost my father to ALS and I walk to being public awareness and to raise money for the future of the ALS community. And I participate in the chapter via social media and the walk to have a community of people who understand what you have gone through and to help those on their ALS journey.”

“Running the marathon and raising money in my father’s honor helped me to share my story, give him a voice as he was slowly losing his, and find meaning in tragedy. I grieved and healed my broken heart on those long training runs. And those runs were fueled by all the people who had given to the cause.”

– Christine Simonson

Blake Boring 

“The ALS Association has been so amazing to my mom and my whole family. Before her diagnosis I’ve never heard of this horrible disease. I love to fundraise because I know the money goes towards research and helping other families get through all the changes ALS comes with both physical and emotional. My mom has always been super independent and I know the fundraising goes towards tools/equipment to help her be as independent as she can! Also, I love to participate in the walk because it brings more awareness to people who don’t know exactly what ALS is.” 

“I lost my dad to this disease. After seeing what he went through, I never want to hear another person go through it again. Also, the chapter helped my parents with so many resources (physical and emotional) that more families need.”

– Amy Farrell

Alexis Freoni 

“It’s a way to come together as a community, help one another. No one is alone.”

Donna Owens 

“This devastating disease affects all family members…this is the reason we all come together to walk to raise awareness and raise money for a cure. Donna is my daughter and everyday I’m so inspired by her determination. We all share in this heart breaking devastation of her beautiful person….she does not give in and fights everyday to beat this dreadful disease.”

Debbie Maier Jacknin 

“I remember Larry coming home from the hospital. Up until a point he was doing pretty well but he took a turn and was struggling with breathing among other things. When he came home from the hospital he needed help (I think it was a shower chair). We called the  Chapter and they came that afternoon. While there, they explained to us that there are many services they provide and suggested they come back when we have time to sit down and talk. We did that and (to quote Casablanca) that was the beginning of a beautiful friendship. We could not have navigated ALS with their help. They were still there for me when he passed. It’s been almost 5 years and they still check in on me.” 

My family and I raise money in Steve’s memory, so his battle is never forgotten. In doing so, we help raise awareness about ALS, we help others in our community living with ALS, we walk for those who no longer can and one day, hearing the words of an ALS diagnosis won’t be a death sentence because there will be a cure! 

– Natalie Laskey

“My involvement with the chapter came from my husband’s battle with ALS. He was diagnosed in May 2018, but it wasn’t until late September, early October 2018 that we were introduced to the chapter and what it can do to help him. (He was in hospice at this time, and through the hospice service we were introduced to the chapter) Through the chapter, we received a grant, which was used to pay for the home health aids so that I could go to work. We also received a wheelchair from the loan closet. 

He lost his fight in November of 2018. The following year, I decided we would do the walk in his memory so I started Team Red Rooster, with a goal of raising $5000. In my mind, that money would give another family living with ALS a grant to use for what they needed. When picking up t-shirts at the chapter for the 2019 walk, I mentioned that I was technically a CEO and we briefly discussed the CEO Soak. When we found out my husband was terminally ill, we did our estate planning and in that, he transferred his business to me, making me the new business owner and technical CEO. In 2020, I did the CEO Soak in memory of my husband and to honor him for the business he entrusted to me. 

We love our local ALS chapter! 

The chapter has helped me get out of my comfort zone and reach out to people in a way I normally wouldn’t do in order to fundraise and bring awareness. And you all got me to stand in a fountain and get soaked.”

Jeannine Schoenecker 

“Words can never describe the range of emotions I felt when my husband Brett was diagnosed with ALS. Throughout our journey the one focal point was the ALS Association of Western PA. They have provided support, resources, education and they have made our cause their cause . They also provided some predictability to this very unpredictable disease. We were offered the opportunity to advocate on behalf of the Association and that was one of the best things that happened to us. It provided us a platform to advocate so that no one else will have to experience our journey. That is also why we fundraise. We could not go through this journey without the support of the ALS Association of Western PA. Helping to raise funds is our way of giving back to the Association.” 

“We need a cure! we’ve watched my uncle & my mother pass from familial ALS. it takes such a toll on the whole family. we can’t bare to watch another family member suffer. I want to release my fears of bringing a child into this world.. wondering whether or not I will have it or I’ll pass the gene to them. it’s terrifying & sad!” – Carli Gilchrist

Jessica Kozak

“When my mom had ALS the chapter did so much for us. When she passed away I felt like I needed to raise whatever I could so that the chapter could continue helping other patients/families. The more money that is raised the more they can do. Money for research is also important to me because I want to see the day when no one else ever has to deal with such a terrible disease. All money raised or items donated from our team is in memory of my mom and I know she’d be very proud of that.” 

Don Sharon Squillario 

“When you live in a small town and you have no local answers for a person that you know has something wrong, you know you have to go to a larger city to find some answers. That’s what we did with my Mom. When we came to Pittsburgh and she was diagnosed with ALS, the ALS Western PA Chapter allowed us not to have to want for a thing to help Mom. They were there from day one — and they were there 18 months later when Mom lost her battle. That’s why I do what I do — to say thank you to the Chapter for what they did for Mom. I will continue to help raise funds to assist families battling this monster and to find a cure so no one has fight this battle. I will fight for those who can’t!! 

I think the biggest thing is that everyone gathering at the different events are there for one thing—to find a cure. So many have been through a true battle with our PALS that have passed, which allows us to be a help to those who are currently going through the battle – even if it’s as minor as a hug or offering to help in any way we can.”

If you want to join this incredibly strong community and do more in the fight against ALS, consider the following:

Patty Letters and Lindsay Litterini Share How Chapter Support Groups Help Families Cope

Caregiver Support Group

What is the Caregiver Support Group?

The caregiver support group is available to provide encouragement and comfort to those who are caring for someone living with ALS. Please join us for an opportunity to share your feelings, develop relationships, receive emotional support, and discuss common caregiving issues with other caregivers. 

This support group is open to all current caregivers.

I am thankful for The ALS Association’s support groups. It is so nice to be able to talk to people that understand our journey. Unless you lived it, you don’t fully understand the stress, heartbreak, and cruelty of this disease. I have formed so many friendships and now have a strong network to rely on when I need the support.

Patty Letters

To register/ learn more about the Caregiver Support Group, please contact Sandra Thompson at 412.821.3254 or sandra@cure4als.org.

What is Powerful Tools for Caregivers?

Powerful Tools for Caregivers is a 6-week comprehensive course that helps caregivers take better care of themselves while caring for a friend or relative with ALS. In six classes, held once a week, you’ll learn self-care tools to reduce stress, improve self-confidence, better communicate your emotions, make tough decisions, manage time, set goals, solve problems, and locate helpful resources. 

When you’re caring for a loved one with ALS, you will want to do anything and everything to make their lives better, and to take care of them.

Lindsay Litterini, ALS Caregiver

By taking care of your own health and well-being, you become a better caregiver to those you love. Whether you provide care for a spouse, partner, parent, child, or friend; at home or in a care facility; whether you are down the block or miles away, our Chapter strongly encourages you to take advantage of our free 6-week Powerful Tools For Caregivers course starting Saturday, April 3rd – Saturday, May 8th.

To register/ learn more about the next Powerful Tools for Caregivers Class, please contact Sandra Thompson at 412.821.3254 or sandra@cure4als.org.

Our 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 our website offer a wide range of information for patients, caregivers, family members, friends, and healthcare workers. To register with our Chapter for services, support, and to ensure you receive updates on our educational programs, please call 412-821-3254 or 1-800-967-9296, or click here fill out the Chapter registration survey online.

Chip Carton Shares His Experience with the CDC ALS Registry

The National ALS Registry and Biorepository is the single largest ALS research project ever created and designed to identify ALS cases throughout the entire United States. Created in 2009, the Registry collects critical information about the disease that will improve care for people with ALS and help researchers learn what causes the disease, how it can be treated and prevented. 

From my point of view, there really is no downside to joining the CDC ALS Registry. However, there are many many good reasons to join. One of those reasons being to contribute to research that will help all people living with ALS, now and in the future.

Chip Carton, Person Living with ALS

Chip Carton joined the ALS registry several years ago, after Chapter Director of Care Services, Marie Folino, MSW, LSW had mentioned it to him.

I joined the ALS registry, as soon as I heard Marie tell me about it several years ago. It is a great road to travel to find information and they share all information and studies with The ALS Association National office.

Since then, Chip has donated blood, participated in a drug trial, and completed countless surveys through the registry to continue to further ALS research at the national and international level. In addition, he even starred in the CDC’s “Why I Enrolled” video below.

When asked why he joined the Registry, Chip said

The ALS Registry is a great road to travel to find information…and they share all information and study data with The ALS Association National Office. I hope that doing this helps us in our battle to defeat ALS and provides a better future for people with this horrible disease.

How to Join the National ALS Registry

STEP ONE:

Click the “Join ALS Registry/Create Account” link located on the center of the Nationals ALS Registry homepage.

STEP TWO:

Click the “Join ALS Registry/Create Account” button located at the bottom of the ALS Patient Account Box.

STEP THREE:

Read the Account Notification Consent Form. If you agree, click the “I Agree” button located at the bottom of the Account Notification box.

STEP FOUR:

Answer ALS patient validation questions. Click the “Next” button to proceed to the next question. Answering these questions verifies your eligibility to participate in the registry.

STEP FIVE:

Read the National ALS Registry Consent Form. Clicking on the “I Agree” button means that you consent to participating in the registry. Note: You can withdraw from the registry at any time.

STEP SIX:

Fill in all of the required fields located on the ALS Patient Account Page. All required field are marked with a red asterisk (*). Remember your user name and password. You will need these to log into the registry to retrieve or update information. Click the “Submit” button located at the bottom of the ALS Patient Account box. When you have successfully joined the registry, you will see a green box that says “Registration Completed….”

STEP SEVEN:

Click the “Return to Login” link located at the bottom of the “Registration Completed” box. This will take you to the registry login page where you can sign in.

How to take an Available Survey on the National ALS Registry

STEP ONE:

Click the “Available Surveys” link located at the top of the Surveys box on the ALS Patient Account Page.

STEP TWO:

To view instructions for the Surveys, click the “General Instructions” link located above the Survey box on the ALS Surveys homepage.

STEP THREE:

To take a Survey, click a Survey Number or Survey Name located in the Survey column on the Surveys homepage.

Should you need help registering, please call the CDC at 877-442-9719 Monday-Friday between 9 a.m.-6 p.m. ET. You can also call the Chapter for more assistance at 412-821-3254.