The ALS Association Western PA Chapter Celebrates Memorial Day Weekend by Honoring the Fallen

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.

“Hero” – A Mother’s Day Tribute

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.”

Michelle Salamon

May 1st Marks the Start of ALS Awareness Month

May is #ALSAwarenessMonth!

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:

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.

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.


The ALS Association Western PA Chapter Celebrates National Volunteer Week

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.”

Morgan Geniviva

“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.”

Matt Sudaric

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.”

Amy Shaughnessy

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.”

Maryann Mathews

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

Executive Director, Ryan Reczek’s Open Letter to the ALS Community Amidst COVID-19 Outbreak

Hello,


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 ryan@cure4als.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 Instagram and 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.


Sincerely,

Ryan Reczek
Executive Director
The ALS Association Western Pennsylvania Chapter

Fun things to do Indoors

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.

FREE FUN THINGS!

  • Have a karaoke night and sing along to all of your favorite songs
  • Learn something new, or find inspiration by listening to some TED Talks
  • Have a game night
  • Take a tour of the world’s most famous museums– from your couch!
  • Try out a new recipe
  • Spring cleaning, anyone? Set aside unwanted clothing to donate or sell on sites like eBay or Poshmark
  • Take a nice long bubble bath
  • Clean out your refrigerator
  • Use Goodreads to rate the books you’ve already read and get new personalized recommendations
  • Build a blanket fort in your living room
  • Do some meditating – Use apps like Breathe and Calm to guide you!
  • Sing a song
  • Watch the sunrise or sunset
  • Make small house repairs
  • Paint, draw, sculpt, design – express yourself through art!
  • Start a blog or journal – and write your story!
  • Exercise from home
  • Listen to your favorite music
  • Take up yoga – use YouTube to find FREE classes!
  • Do some bird watching
  • Cook your favorite dinner- and eat by candlelight!
  • Knit or crochet
  • Listen to the radio
  • Sit in the backyard and enjoy the fresh air!
  • Clean out your car
  • Play with your pet
  • Play a game of cards
  • Break out an old instrument and play a tune
  • Build a model
  • Do a crossword puzzle
  • Read some poetry
  • Play a computer game
  • Walk your dog
  • Do some daily stretching
  • Visualize a pleasant scene
  • Spend some time surfing the internet
  • Color in a coloring book
  • Learn a new language- Download Duolingo to learn for FREE!
  • Listen to a new podcast
  • Dust off your library card- use Libby to borrow e-books and audiobooks from your local library for FREE!

FUN SUBSCRIPTION/FEE-BASED SERVICES

  • Download a new audiobook from Audible
  • Check out local restaurants and bakeries for adapted delivery and takeout options
  • Take advantage of businesses offering special hours of service, for example, Dollar General’s “first hour” of business dedicated to senior citizens

“The Anniversary Song”

Brett and Jeannine Schoenecker; 2019

“As some people do, we first started out as friends…” said Brett Schoenecker, who was diagnosed with ALS over a year ago.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When those motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease often become totally paralyzed, and the progressive degeneration of the motor neurons eventually leads to death.

How The Couple Met

Brett’s relationship with his wife, Jeannine, sparked from a seemingly innocent friendship. Working for the same company, Brett and Jeannine shared a common office friend group that often played sports together and met up after a long day at the office for beers and a bite to eat. One night after playing some wallyball, Brett and Jeannine found themselves as the first to arrive to the restaurant they and their friends had agreed to meet up at. As they normally would, they got to talking.

“We were just chatting and Brett asked me for some dating advice,” said Jeannine. “I was all in on giving some advice, but was shocked when the advice he was seeking was about me!”

And the rest is history, the couple agrees.

This is cliche, but we have always been best friends and supported each other no matter the circumstances. We have been and always will be a team, and a damn good one at that,” said Brett.

The story behind “The Anniversary Song”

Since he was in high school, Brett has been an avid singer and guitarist, playing in various bands throughout the area. And 23 years ago, he scored the chance to play at an outdoor Car Cruise. Brett and his band were ecstatic at the opportunity to play for an entirely new crowd. However, Brett soon realized that the date of the gig coincided with his first wedding anniversary with Jeannine.

After going back and forth on how to bring the subject up to Jeannine, Brett finally gained the courage and asked if it would be okay if the band performed on that night. To his surprise, Jeannine responded “sure!” without hesitation, and even offered to come and watch the band perform!

I knew I would want to make it up to her, so in the weeks before the show, I wrote “The Anniversary Song,” said Brett. “At the show, I played it for her and it has been very special to us ever since.”

The semi-biographical original begins by detailing the woes of Brett’s former love life. Determined to follow his own way, “never lonely“, and unbothered by the pressures of society to settle down, Brett was content on his own…

Until the night when his “eyes opened up” and he met Jeannine. After that, his life was changed forever, and the tone of the lyrics shift to emphasize Brett’s unwavering love and adoration for his new wife.

“Nothing on this earth could keep us apart,” he sings, as the intimate guitar solo emerges and Brett is “set free” from his former self. “You’re the one,” then repeats as the instruments slowly begin to fade out and the song comes to a close.

Since Brett’s diagnosis, the couple admits that the value of their time together has changed dramatically. Today, as they continue to battle ALS with the same positive and loving spirit that once sparked their relationship, they have made each other a promise; to live life according to their motto—

“make every day a good day.”

Listen to “The Anniversary Song:”