#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:

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