Our Story | Our Journey
Discover What Brought Us Here & Our Path Forward – Dedicated to the Memory of Pete Sawyer
A Journey of Support
& Connection
Everyone has a story, their “why,” the reason behind what they do. Ours is rooted in our personal experience. Seeing ALS affect someone is incredibly difficult, but it also motivates us to do more, not only for ourselves, but for those who are also affected by ALS. Explore our story below to learn more about our journey, from then to now.
Our story
Meet Lura & Pete
Pete’s Experience
Lura’s Experience
The Impacts & Taking Action
Doing More in the Fight Against ALS
Meet Let Hope Grow
My name is Lura Sawyer, and this journey began when my husband, Pete, was diagnosed with ALS in April of 2015. What started as a slow progression soon took hold with a relentless speed, leaving Pete unable to talk, smile, or walk within a year. I became his caregiver, a role I never anticipated, but one that profoundly transformed our lives.
As a veteran, Pete received crucial support through the VA, given that ALS is a 100% service-connected disease. This was a lifeline for us. With assistance from the VA, we received everything from wheelchair ramps to hospital beds, specialized vans, and medical supplies. Despite the challenges, we felt grateful for this support – a safety net that has allowed us to navigate these difficult years together.
Early on, when we started visiting the Hershey ALS Clinic, Pete was listed as end-of-life. That was eight years ago, and even though Pete has transitioned from this life, we continue to push forward.
In those early days, I never imagined I could take on this role. I was someone who once felt queasy at the sight of blood, yet here I am, managing feeding tubes, navigating complex medical equipment, and learning every intricacy of his care. Together, we’ve learned to keep going – to attend events, go on vacations, and make memories beyond our home. ALS is a harsh reality, but it has not confined us. I want others to see this and to understand what it means to truly live with ALS.
One of our first trips was to a funeral in southern Illinois – a journey that required more equipment than I’d ever packed in my life: breathing machines, suction machines, and a checklist of essentials. We only made it as far as Columbus, Ohio, before I realized I’d forgotten all his medication. We turned around, but we learned, and we prepared. Now, we don’t let obstacles keep us at home, though finding truly accessible accommodations remains a struggle. This, too, is a fight we must take on.
For the past nine years, we’ve advocated for ALS patients and caregivers, traveling to state and national capitals to speak on issues that matter. We’ve faced buildings that don’t accommodate wheelchairs, hotels that lack the essentials, and countless barriers for the disabled. These are things I will continue to fight to change – not just for Pete, but for every person living with ALS.
In 2019, at the age of 59, I took a leap of faith and enrolled in an online social work program, completing my BSW in 2022. I did this for Pete, for myself, and for every ALS family who needs support. There were days he wondered why I spent time away, but he always encouraged me, knowing that this journey was just as much for others as it was for us. I interned at the Hershey ALS Clinic, facilitated support groups, and provided hands-on support to other ALS families. In August of 2024, I completed my MSW, armed with the skills and insight to make an even greater impact.
It was during this time that I began to see the stark disparities ALS patients face. Many families lack the resources to provide a dignified life for their loved ones. They can’t afford to modify bathrooms for accessible showers, leaving them with only bed baths. Caregivers, exhausted and isolated, can’t afford a break or even a moment away. Vacations, accessible homes, transportation – these are dreams that feel out of reach for so many.
And so,
Let Hope Grow
was born.
Our mission is to provide ALS patients and their families with what they need to live fully, with dignity and joy. We aim to build fully accessible vacation homes, offering ALS families a safe, supportive environment where they can take a break and enjoy life. We envision respite houses, where caregivers can place their loved ones for a day or two to rest and recharge, and accessible transportation to help ALS patients get to appointments or simply enjoy an outing.
This vision will continue to grow, just as our community does. At Let Hope Grow, everyone involved is touched by ALS, either as a caregiver or as family. Together, we are committed to making a difference – to ensuring that ALS patients and their families live extraordinary lives through the most challenging times.
Our story
Meet Lura & Pete
My name is Lura Sawyer, and this journey began when my husband, Pete, was diagnosed with ALS in April of 2015. What started as a slow progression soon took hold with a relentless speed, leaving Pete unable to talk, smile, or walk within a year. I became his caregiver, a role I never anticipated, but one that profoundly transformed our lives.
Pete’s Experience
As a veteran, Pete received crucial support through the VA, given that ALS is a 100% service-connected disease. This was a lifeline for us. With assistance from the VA, we received everything from wheelchair ramps to hospital beds, specialized vans, and medical supplies. Despite the challenges, we felt grateful for this support – a safety net that has allowed us to navigate these difficult years together.
Early on, when we started visiting the Hershey ALS Clinic, Pete was listed as end-of-life. That was eight years ago, and he’s still here, defying the odds with strength and resilience. I am here by his side, and I will remain here for as long as he wishes to live.
Lura’s Experience
In those early days, I never imagined I could take on this role. I was someone who once felt queasy at the sight of blood, yet here I am, managing feeding tubes, navigating complex medical equipment, and learning every intricacy of his care. Together, we’ve learned to keep going – to attend events, go on vacations, and make memories beyond our home. ALS is a harsh reality, but it has not confined us. I want others to see this and to understand what it means to truly live with ALS.
One of our first trips was to a funeral in southern Illinois – a journey that required more equipment than I’d ever packed in my life: breathing machines, suction machines, and a checklist of essentials. We only made it as far as Columbus, Ohio, before I realized I’d forgotten all his medication. We turned around, but we learned, and we prepared. Now, we don’t let obstacles keep us at home, though finding truly accessible accommodations remains a struggle. This, too, is a fight we must take on.
The Impacts & Taking Action
For the past six years, we’ve advocated for ALS patients and caregivers, traveling to state and national capitals to speak on issues that matter. We’ve faced buildings that don’t accommodate wheelchairs, hotels that lack the essentials, and countless barriers for the disabled. These are things I will continue to fight to change – not just for Pete, but for every person living with ALS.
Doing More in the Fight Against ALS
In 2019, at the age of 59, I took a leap of faith and enrolled in an online social work program, completing my BSW in 2022. I did this for Pete, for myself, and for every ALS family who needs support. There were days he wondered why I spent time away, but he always encouraged me, knowing that this journey was just as much for others as it was for us. I interned at the Hershey ALS Clinic, facilitated support groups, and provided hands-on support to other ALS families. In August of 2024, I completed my MSW, armed with the skills and insight to make an even greater impact.
It was during this time that I began to see the stark disparities ALS patients face. Many families lack the resources to provide a dignified life for their loved ones. They can’t afford to modify bathrooms for accessible showers, leaving them with only bed baths. Caregivers, exhausted and isolated, can’t afford a break or even a moment away. Vacations, accessible homes, transportation – these are dreams that feel out of reach for so many.
Meet Let Hope Grow
Our mission is to provide ALS patients and their families with what they need to live fully, with dignity and joy. We aim to build fully accessible vacation homes, offering ALS families a safe, supportive environment where they can take a break and enjoy life. We envision respite houses, where caregivers can place their loved ones for a day or two to rest and recharge, and accessible transportation to help ALS patients get to appointments or simply enjoy an outing.
This vision will continue to grow, just as our community does. At Let Hope Grow, everyone involved is touched by ALS, either as a caregiver or as family. Together, we are committed to making a difference – to ensuring that ALS patients and their families live extraordinary lives through the most challenging times.
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About ALS & More About Pete
Meet Pete
Pete was an amazing man. He brought passion, grit, and laughs to everything and everyone he met. There were no signs or precursors before his ALS diagnosis. But, once they started, we had to adjust our lives very quickly to support Pete as best as possible.
A New Challenge | Support
Adjusting to this much change so quickly could never be an easy thing. We saw changes, we adapted our home, we grasped onto whatever Pete could still do on his own for as long as his body would let him. But, through the challenges and barriers, we discovered a way to be closer and so many other ways to still enjoy our time together. We also found there was little education about the resources out there to support families like ours.
Now, We Continue
The final stages of ALS are difficult, as you could imagine. We had more health and checkup visits, went through new medicines and innumerable tests. Eventually, we did have to say goodbye to Pete as he transitioned through this all. From here, we press on with a solid mission and a passion for trying to help families from feeling alone or stuck with no support. We do this for Pete, for you, and for our communities.
The Next Part Of
Our Story Features…YOU!
We can’t do this alone and our mission to support families and caregivers is neverending. We invite you to donate your time, events, and resources to our cause. We thank you in advance for any and all support!
All of Our Efforts Are in
Memory of
Pete Sawyer
If you knew Pete, resonate with our story, or want to share a positive message, submit the form below. Your message will be added to our memorial section. Even if you did not know Pete, you can honor him or share your story on our ALS Stories & Memories Page.
Positive
Message
For Pete
-Lura Sawyer | Founder of Let Hope Grow
What is ALS?
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease or MND, is a neurodegenerative disease that attacks motor neurons, weakens voluntary muscles throughout the body, and leads to paralysis. ALS can affect anyone. The average age of onset is 40-70, and an estimated 30,000 people in the U.S. have ALS.
ALS FACTS
• Over 5,000 people are diagnosed each year
• Average life expectancy is 2-5 years after initial symptoms, but 10% of people live more than 10 years, and 5% live more than 20 years
• Every 90 minutes, someone is diagnosed, and someone passes away
• CAUSE: 90% of the cases are unknown, and 10% are inherited through a mutated gene
• Estimated out-of-pocket costs: $250,000 per year per patient
• Only 3 FDA-approved drugs can slow progression
• There is currently NO CURE
Diagnosis
No single test can diagnose ALS. Diagnosis may take months or over a year.
Symptoms
Early signs may include:
Progressive weakness
Difficulty walking
Difficulty grasping objects
Muscle twitching
Slurred speech
Difficulty swallowing
Shortness of breath
Military
Veterans are twice as likely to get ALS for unknown reasons. This includes service during peacetime or war, across all branches.
ALS RESULTS IN PARALYSIS
ALS devastates patients and their families. It leads to paralysis and drastically shortens life expectancy, typically 2-4 years after diagnosis. Patients gradually lose the ability to care for themselves, creating immediate needs for assistance with walking, bathing, and feeding.
Resources
Caregivers, often spouses and children, face significant financial and emotional burdens. Veterans eligible for VA benefits receive support, but those who are not face major challenges. All ALS patients and their families need resources, emotional support, and practical assistance to navigate this disease.