Most songwriters will tell you, the key to a really good song is the lyrics, a story being told with unique chords and melodies, evoking a specific emotion and compelling listeners to connect and share. No one knows this better than the Swope family, sharing their beautiful memories and storytelling through music, rhythm and song.
We recently talked with Ashley Wong, one of the 2022 scholarship recipients, to learn more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in healthcare.
We recently talked with Liam Rudin, one of the 2022 The Jane Calmes ALS Scholarship recipients, to learn more about his connection to ALS, what receiving the scholarship means to him, and his future plans studying accounting.
Matt Miller might just be the most shameless member of ‘Team Finlay,’ having spent the last 10 years taking outlandish dares from family and friends to raise money for his cousin Jack. From sleeping on roofs to participating in water aerobics dressed like Jane Fonda, there is nothing Matt won’t do to help fight ALS.
We recently talked with Veronica Darland, one of the 2022 Jane Calmes ALS Scholarship recipients, to learn more about her connection to ALS, what receiving the scholarship means to her, and her future plans in journalism.
Jackie could have been the The ALS Association Greater Philadelphia Chapter's volunteer of the month years before her mother's ALS diagnosis. Ironically, in 2013, her dedication to the ALS mission took on an entirely new meaning for her.
Erin Vierstra found the group Her ALS Story while scrolling on Instagram a little over a year ago. Erin's story is one with a long family history, and being a part of this group of women has given her a support, space to be, a platform and inspiration to keep a good thing going and growing.
We recently talked with Garrett Sakomizu, one of the 2022 recipients of The Jane Calmes ALS Scholarship, to learn a little more about his connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare and ALS research.
An avid skier, cyclist, and hiker, Father Jim has been a pastor at St. Michael’s Parish in Olympia, Washington for over twenty years. With members of the church community, he has traveled to numerous countries for both missionary work and recreational trips. A few years ago, he began having difficulties with muscle twitches, upper body weakness, and leg cramps. Before long he was diagnosed with ALS.
The urge to support, or be supported, is often accentuated at times of great challenge, or uncertainty. As anyone living with ALS or being an ALS caregiver knows, this disease can bring plenty of both. That’s why The ALS Association provides support groups in every state.
Pat was a former solutions team lead at Esri, a geographic information system (GIS) company, and spent his 25-year career in GIS creatively using mapping technology to solve real-world problems in the utility industry. Forced to retire in 2018 due to the progression of his disease, he had no idea where his passion for mapping and data would take him. “After my diagnosis, I wanted to bring GIS to the ALS battle, but wasn’t sure where to start,” says Pat.
In some way, shape or form, we are all list people. Some people are of the pen and paper list variety, others have taken to keeping notes on their phone or online calendar. And even those who would claim to not keep lists probably have an idea of some “to dos” they keep in their head. For ALS caregivers, far too often the last thing on their lists is themselves. So, here’s a list of ALS caregiver “to dos” for their own self-care and wellness.
After my dad was diagnosed, there was no hesitation that our family was going to fight alongside him. So that meant it was time to volunteer with The ALS Association. We all knew right then and there that our volunteer work wasn’t going to save our father, but it was going to help others not feel the devastation we were feeling at the time of his diagnosis.
Maureen Stemmelen was diagnosed with ALS in 2016. She has always been known as "the Gatherer", bringing friends, family and community in with open arms and an open heart. Her ALS journey has only served to affirm this, and she encourages everyone to lean in, let your friends, family and neighbors surround you - caregivers are your lifeline.
Jack Finlay was just 22 years old when he was diagnosed with ALS in 2010. Working toward his degree at the University of Montana, he vowed to not let the disease get in the way of achieving his dreams and living his best life.
Jake met Bill Wechsler during his freshman year in high school in Holliston, MA. Challenged with academic and mental health issues at the time, Jake was referred to Bill who was the school social worker for counseling and support. By the spring of his junior year, Jake had made so much progress he no longer needed the formal counseling he had become accustomed to, but he still frequently visited Bill to spend time talking with him. It was around that same time that Bill was diagnosed with ALS.
Since Mark’s diagnosis in 2000, he has been committed to the fight against ALS on many levels. Over the past 21 years, he has advocated locally at the state level and nationally on Capitol Hill. He’s volunteered at innumerous events with The ALS Association Mid-America Chapter and served on the Chapter’s board and Services Committee. All who know him say his ALS diagnosis does not define him, instead it motivates him to do more and to give hope to others.
I’m hopeful because when my father left us, he left a piece of himself with me, and I’ll do everything I can to raise as much money and awareness as possible so that those three letters - A L S - are no longer considered a death sentence.
Today, in Major League ballparks across the country, fans will take part in the celebration of the second annual Lou Gehrig Day, an event to help spread awareness and raise funds for people living with ALS and their families. And no baseball fan is more excited than Larry Falivena.