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4T Below ZeroPublic Policy Conference . This annual 3-day event provides a special opportunity for those affected by MS to meet with Congressional representatives. Together, they shine a light on the biggest challenges for people affected by MS, tell the world what it’s like to live with MS, and showcase the programs and policies that benefit the MS community. “It was really nice to be there, to say, ‘I’m representing one million people diagnosed. If you don’t have MS, you need to understand a person with MS is trying to figure out who they are now and mourning who they used to be,” Nick says. “People forget it’s not just me who has MS. It’s my wife, my girls. The Society does a great job of recognizing that and including caregivers.” Nick credits the Society with training attendees to feel equipped and empowered to share their stories. “You’re greeted with a sea of orange. You don’t even leave the hotel desk before meeting someone who cares you’re there … the community is accepting in a way you’ve never experienced it. You get to make friends outside of where you probably wouldn’t meet them — the opportunity expands your community,” he says. “Everyone who wants to get involved? The Society will find a way to use your skillset.” Nearly 11 years after his diagnosis, Nick has confidently found his place within the MS movement, fostering a growing community with his podcast and advocacy endeavors. “I tried to take this on my own and found that’s not the best way to do it. But community is important. You need to know there are people outside your house you can talk to who understand,” he says. “I’m just telling my story again and again and finding likeminded people. I just want to be part of the voice for people who think they don’t have a voice. Everyone has a story. Some of us are more comfortable telling it to people who want to listen.” " c-nmssatomrichtext_nmssatomrichtext-host="">Nick Spayd has made a life out of jumping into action. Before he was diagnosed with multiple sclerosis in 2013, he spent 14 years dutifully serving as a police officer for the Delaware County Park Police and as a firefighter, EMT and assistant fire marshal for Aston Township, Pennsylvania. But MS changed all of that, virtually overnight. “The hardest thing for me to let go of was the hypervigilance. I am always ‘on’ and there’s nothing to be ‘on’ for,” he says. Due to his symptoms, he was officially retired from each role — identities he’d held for so long stripped away in a matter of weeks. Nick confesses the earliest days post-diagnosis were very dark. He was 33, married with two young daughters, and completely unsure of what lay ahead Upon receiving his wheelchair prescription, Nick googled “wheelchair influencers,” leading him to discover Terry, a fellow wheelchair user living with MS. Terry’s Instagram story mentioned a virtual support group, which Nick dropped in on. After connecting with Terry and realizing they shared more than the same diagnosis, the idea for a podcast was eventually hatched. They both recognized that no one was targeting the needs of men living with MS and set out to utilize the platform to build community and awareness. Tired of feeling powerless, Nick explains that the podcast was his way to regain some power: “Personally, I get to keep the hope that I’m still the responder I was, in a way. “Our initial goal was to talk to anyone who wanted to or needed to share their story. We want people to understand their story is important for others to see. Awareness is always the goal. Awareness is the thing that permeates. And if I can be honest in my story, the hope is others can feel they can be honest with theirs too,” he says. After a couple years of broadcasting 4T Below Zero , Nick wanted to amplify his voice even further. He reached out to the Society to learn more about advocacy efforts. After some conversations with the Advocacy team, Nick was invited to share his experiences at Public Policy Conference . This annual 3-day event provides a special opportunity for those affected by MS to meet with Congressional representatives. Together, they shine a light on the biggest challenges for people affected by MS, tell the world what it’s like to live with MS, and showcase the programs and policies that benefit the MS community. “It was really nice to be there, to say, ‘I’m representing one million people diagnosed. If you don’t have MS, you need to understand a person with MS is trying to figure out who they are now and mourning who they used to be,” Nick says. “People forget it’s not just me who has MS. It’s my wife, my girls. The Society does a great job of recognizing that and including caregivers.” Nick credits the Society with training attendees to feel equipped and empowered to share their stories. “You’re greeted with a sea of orange. You don’t even leave the hotel desk before meeting someone who cares you’re there … the community is accepting in a way you’ve never experienced it. You get to make friends outside of where you probably wouldn’t meet them — the opportunity expands your community,” he says. “Everyone who wants to get involved? The Society will find a way to use your skillset.” Nearly 11 years after his diagnosis, Nick has confidently found his place within the MS movement, fostering a growing community with his podcast and advocacy endeavors. “I tried to take this on my own and found that’s not the best way to do it. But community is important. You need to know there are people outside your house you can talk to who understand,” he says. “I’m just telling my story again and again and finding likeminded people. I just want to be part of the voice for people who think they don’t have a voice. Everyone has a story. Some of us are more comfortable telling it to people who want to listen.” 4T Below ZeroPublic Policy Conference . This annual 3-day event provides a special opportunity for those affected by MS to meet with Congressional representatives. Together, they shine a light on the biggest challenges for people affected by MS, tell the world what it’s like to live with MS, and showcase the programs and policies that benefit the MS community. “It was really nice to be there, to say, ‘I’m representing one million people diagnosed. If you don’t have MS, you need to understand a person with MS is trying to figure out who they are now and mourning who they used to be,” Nick says. “People forget it’s not just me who has MS. It’s my wife, my girls. The Society does a great job of recognizing that and including caregivers.” Nick credits the Society with training attendees to feel equipped and empowered to share their stories. “You’re greeted with a sea of orange. You don’t even leave the hotel desk before meeting someone who cares you’re there … the community is accepting in a way you’ve never experienced it. You get to make friends outside of where you probably wouldn’t meet them — the opportunity expands your community,” he says. “Everyone who wants to get involved? The Society will find a way to use your skillset.” Nearly 11 years after his diagnosis, Nick has confidently found his place within the MS movement, fostering a growing community with his podcast and advocacy endeavors. “I tried to take this on my own and found that’s not the best way to do it. But community is important. You need to know there are people outside your house you can talk to who understand,” he says. “I’m just telling my story again and again and finding likeminded people. I just want to be part of the voice for people who think they don’t have a voice. Everyone has a story. Some of us are more comfortable telling it to people who want to listen.” " c-nmssatomrichtext_nmssatomrichtext-host="">Nick Spayd has made a life out of jumping into action. Before he was diagnosed with multiple sclerosis in 2013, he spent 14 years dutifully serving as a police officer for the Delaware County Park Police and as a firefighter, EMT and assistant fire marshal for Aston Township, Pennsylvania. But MS changed all of that, virtually overnight. “The hardest thing for me to let go of was the hypervigilance. I am always ‘on’ and there’s nothing to be ‘on’ for,” he says. Due to his symptoms, he was officially retired from each role — identities he’d held for so long stripped away in a matter of weeks. Nick confesses the earliest days post-diagnosis were very dark. He was 33, married with two young daughters, and completely unsure of what lay ahead Upon receiving his wheelchair prescription, Nick googled “wheelchair influencers,” leading him to discover Terry, a fellow wheelchair user living with MS. Terry’s Instagram story mentioned a virtual support group, which Nick dropped in on. After connecting with Terry and realizing they shared more than the same diagnosis, the idea for a podcast was eventually hatched. They both recognized that no one was targeting the needs of men living with MS and set out to utilize the platform to build community and awareness. Tired of feeling powerless, Nick explains that the podcast was his way to regain some power: “Personally, I get to keep the hope that I’m still the responder I was, in a way. “Our initial goal was to talk to anyone who wanted to or needed to share their story. We want people to understand their story is important for others to see. Awareness is always the goal. Awareness is the thing that permeates. And if I can be honest in my story, the hope is others can feel they can be honest with theirs too,” he says. After a couple years of broadcasting 4T Below Zero , Nick wanted to amplify his voice even further. He reached out to the Society to learn more about advocacy efforts. After some conversations with the Advocacy team, Nick was invited to share his experiences at Public Policy Conference . This annual 3-day event provides a special opportunity for those affected by MS to meet with Congressional representatives. Together, they shine a light on the biggest challenges for people affected by MS, tell the world what it’s like to live with MS, and showcase the programs and policies that benefit the MS community. “It was really nice to be there, to say, ‘I’m representing one million people diagnosed. If you don’t have MS, you need to understand a person with MS is trying to figure out who they are now and mourning who they used to be,” Nick says. “People forget it’s not just me who has MS. It’s my wife, my girls. The Society does a great job of recognizing that and including caregivers.” Nick credits the Society with training attendees to feel equipped and empowered to share their stories. “You’re greeted with a sea of orange. You don’t even leave the hotel desk before meeting someone who cares you’re there … the community is accepting in a way you’ve never experienced it. You get to make friends outside of where you probably wouldn’t meet them — the opportunity expands your community,” he says. “Everyone who wants to get involved? The Society will find a way to use your skillset.” Nearly 11 years after his diagnosis, Nick has confidently found his place within the MS movement, fostering a growing community with his podcast and advocacy endeavors. “I tried to take this on my own and found that’s not the best way to do it. But community is important. You need to know there are people outside your house you can talk to who understand,” he says. “I’m just telling my story again and again and finding likeminded people. I just want to be part of the voice for people who think they don’t have a voice. Everyone has a story. Some of us are more comfortable telling it to people who want to listen.”
Nick Spayd
