Patti Shea Runs the 2025 Boston Marathon
April 21, 2025
On April 21, 2025, I will be running the Boston Marathon in honor of three incredible women—Leah Devereaux, Lauren Rothwell, and Suzanne DeBeer. Each of them has faced ALS with immense courage, and their stories are a testament to strength, love, and resilience.
I would also like to dedicate my run to the countless ALS caregivers who, through their grit and determination, become the glue holding their families together in the face of this devastating disease. Their unwavering support is nothing short of heroic.
Compassionate Care ALS (CCALS) played an integral role in the journeys of these three women, providing them and their families with guidance, resources, and unwavering compassion. As I take on this 26.2-mile challenge, I hope to raise awareness and support for CCALS so that they can continue their vital work for those navigating ALS.
Your donation can make a real difference in the lives of those affected by ALS. Every contribution helps CCALS provide essential equipment, emotional support, and guidance to families facing this disease. Please consider making a donation to honor Leah, Lauren, and Suzanne and to support the caregivers who stand by their loved ones every step of the way.
Click below to donate and be part of my Boston Marathon journey.
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Please read below to learn more about Leah, Lauren, and Suzanne and why I am running in their honor.
Leah Devereaux
In February 2019, when I was seven months pregnant, my husband Rich, only 28 at the time, received the devastating diagnosis of ALS. Our son was just 18 months old, and we had recently moved into our forever home that past November. The following month, my mother was diagnosed with stage IV ovarian cancer. We welcomed our daughter into the world in April of 2019, finding immense joy amidst the pain and uncertainty of our future as a family.
Being a partner to someone with a terminal illness is brutal, gut-wrenching, and heartbreaking. We faced these challenges with strength, thriving as a family, supported by a network of love and compassion. That network consisted of friends, family, and Compassionate Care ALS (CCALS). So many of the staff at CCALS became integral parts of our support system. There were days when merely surviving was an achievement, but there were also days when we thrived.
From navigating MassHealth to mental health support through virtual support groups, CCALS became our gold standard for help. Even though Rich chose not to participate directly in these groups, he reaped the benefits of a supported partner.
Our house underwent a variety of major construction projects as Rich’s disease progressed. CCALS was on standby for our increasing equipment needs and for that, I am so grateful. We got to have two incredible trips to the Heald Center in Falmouth, offering all the accessible features we could ever need. We found these trips to the beach to be so incredibly healing. Many of our final precious memories as a family were only possible because of the immense care and support we received from CCALS.
In November 2023, during our seven days in hospice care split between Mass General Hospital and Care Dimensions Hospice House in Lincoln, I had many conversations with Ron Hoffman, the founder of CCALS. These talks helped me navigate the trauma of ALS and my moms death in 2021, interwoven with the joy in our lives – buying our forever home, welcoming our two beautiful children, and watching them connect with their dad in every possible way.
In his final days, Rich and I talked about where he would be after this life. He told me his energy would be in the trees, in the psithurism, which is the sound of the wind through the leaves. His spirit will live on in the apricity, the feeling of the warm sun on our skin and in the joyful laughter, and in the tears of our children.
Together, we can continue to make a profound difference in the lives of families affected by ALS, every dollar of your donation will help families just like mine.
Lauren Rothwell
In June of 2016, our family began the difficult journey of ALS. While at an appointment as MGH with my husband Matt, I happened to see a CCALS flyer and decided to reach out to Ron Hoffman. Shortly thereafter he was meeting with our family in NH and helping us navigate our needs. Days later equipment arrived at our home and at that point I realized we were not alone facing this devastating disease.
As changes continued to affect mobility and comfort for Matt, we would reach out to Ron and his team and they would always support us with whatever we needed. We took advantage of living life as fully as we could and enjoyed the simple things that we would have normally taken for granted.
Matt was a fighter! I was honored to be able to take care of him in our home and there is no way I could have done this without the help of my four kids by my side along with family, friends, and CCALS. Watching someone you love face this disease head on is incredibly difficult. There are times you feel defeated, helpless, and unsure if you can handle what’s ahead. I felt comfort in knowing I could reach out to CCALS at any time for emotional support.
Together we can make a difference by supporting the mission of CCALS. They truly make a difference in the lives of so many people with ALS.
Tori Rothwell (Lauren & Matt’s Daughter)
Growing up, my parents were the heartbeat of our family—and honestly, of the whole community around them. Their strength, love, and resilience shaped who we are today. They instilled compassion and community into us at a very young age. When our world was flipped upside down with my dad's diagnosis, we all came together, just like we always had. We were at different stages in life, but we instinctively put aside the noise of our own dramas and grounding ourselves in what really mattered. And what really mattered was being there, together, orbiting around our dad. Those next five years were a bittersweet gift, where we learned to cherish every moment, creating more memories than we thought possible. But there's a sadness in that too, knowing that time was fleeting and precious. Watching our dad physically slip away was a dark journey. But in those moments, we made each other laugh, we cried together, and yes, we bickered, but it was all part of being united. These were the years that truly shaped us, not because we discovered ourselves independently, but because we chose to stay. We found a depth of connection and understanding that no other experience could have given us. In those hard, beautiful years, we learned who we were—and who we would always be to each other.
Suzanne DeBeer
Our family received the ALS diagnosis on our 13th wedding anniversary in 2017, heartbreaking it was Renier would bear it all. Renier passed away in June 2023.
Our daughters were aged 7 and 10. Within the next year Ren and I met with Ron, the founder of CCALS. I always remember Ron saying, yes we are here for the person with ALS but we are equally here for you and the girls. Ron and the staff are very true to their word.
The guidance, art of listening and being for us all emotionally and spiritually. CCALS has given me the best support to be the best mum I could be to my daughters through the journey of ALS.
The opportunity to have family vacations, supplying the safest equipment, technology to help with homework and communication, made an ALS family feel normal.
With this support and guidance our daughters have grown up to be strong advocates for CCALS with confidence and empathy beyond their years.
I will always hold Compassionate Care ALS staff and other families close to us. When Ren passed, CCALS’s help and guidance has continued always at the end of telephone or email or helping write college recommendations. They are family.
