How it Started

Our Story

Welcome to Let Hope Grow, where our mission is to support individuals affected by ALS and the caregivers who stand beside them. 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 transformed our lives profoundly.

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.

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 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.

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.