In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.
I have been very fortunate and extremely unlucky in my life. I have bulbar-onset ALS. Of course, living with this “new normal” is challenging. But my previous experience with grief has informed my attitude now as well, and I try to live each day as best I can, in the most positive way possible.
Mike will never forget receiving a phone call telling him that his best friend, Matt, had been diagnosed with ALS. The first event Mike attended for The ALS Association was a golf event in Janesville with Matt. That one event has now become years of walks and third-party events supporting The ALS Association Wisconsin Chapter.
We recently spoke with Jeff Elbert, volunteer and board member for The ALS Association Florida Chapter, to learn more about his personal connection to ALS and his fight to bring more critical care and support to people living with ALS and their families.
For more than ten years, Donna has worked with The ALS Association Greater Philadelphia Chapter as Director of Development. She has also been a constant advocate, supporting the chapter’s ALS families through fundraising initiatives, and a caring, compassionate ally throughout their ALS journey. Hayley and Felicia joined Donna in her mission to help people impacted by ALS when they were young girls.
We recently caught up with Lindsay Litterini, volunteer and board member for The ALS Association Western Pennsylvania Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.
Volunteering for The ALS Association is the longest I’ve ever done anything in my life. There’s always more to be done, but creating an environment, virtual or in-person, where people impacted by ALS feel welcome, empowered, and heard is so important.
Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, how she’s managing her personal changes in mobility and how she strives to just live in the moment.
Before Brett’s ALS diagnosis, he was an electrician, an outdoorsman and a musician. His hands were his livelihood, creative outlet and unfortunately, the first part of his body to be affected by the disease.
Peter Sawyer of Mechanicsburg, PA is a military veteran and has been living with ALS for five years. He and his wife and caregiver, Lura, are tireless advocates for The ALS Association’s mission and exemplify true ALS heroes.
Carianne “Cari” Meystrik is a true hero to her family, friends and the entire staff at The ALS Association Tennessee Chapter. Cari and her husband Chris had only been married for 6 ½ years when she was diagnosed with ALS in 1998 while pregnant with her fourth child. The couple thought their dreams of growing old together and raising a family were over. Instead, despite the various obstacles brought on by ALS, the Meystrik family has had incredible adventures and made precious memories that carry them through the tough times.
In 2016, Troy Fields had everything going for him. A beautiful and growing family. A highly successful and satisfying career that allowed him to travel internationally. But he also started to notice signs that something wasn’t quite right. After treatment for cancer and a battery of other tests, his ALS diagnosis was eventually confirmed. Instead of focusing on what he was going to lose, Troy opted to channel his energies to be an agent of change for the ALS community.
Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, what courage means to her and how she strives every day to embrace and live by this powerful virtue.
Connecting ALS recently sat down with Sarah Trott to learn more about her experience as an ALS caregiver for her father who recently lost his battle with ALS, and better understand the challenges with grief she has experienced and the steps she is taking to overcome her terrible loss.
Despite all that ALS has taken from me, I still try to maintain a positive attitude and try to enjoy each day. I have much to be thankful for. Instead of dwelling on things I can no longer do, I try to focus my time and energy on things I can still do.
We recently spoke with Joan and Tony Nolting about their personal experience living with ALS and attending an ALS Association Certified Center of Excellence. After experiencing mild breathing symptoms and slurred speech, Tony was diagnosed with bulbar onset ALS in September of 2020, just five days after his 63rd birthday.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.