Dawn & Nash are a husband and wife duo called “Dawn Loves Nash.” They’re also artists who are living and sharing their “hippie gypsy pop” music in and around Nashville, Tenn. Influenced by Sting, John Denver, Paul Simon, Bob Dylan, Fleetwood Mac, Willie Nelson, and Patsy Cline, Dawn Loves Nash aspires to help others through music.
Margot Vaughan has been fighting ALS for more than two years. But she hasn’t been fighting alone. “My family is totally devoted to me,” Margot said. “They keep me going and I’m lucky and grateful to have such an amazing family by my side.”
“If I have to be the face of ALS,” Donna Boring said, “it’s not a bad face to have.” Donna was diagnosed with ALS in 2008, at the age of 37. She is one of the heroes in The ALS Association’s new public service announcement (PSA) campaign showing “The Reality of ALS.”
My name’s Aaron, but my friends call me “Bankz.” I’m a 39-year-old husband to Abbie and father to seven-month-old Lincoln. It was a real shock when I received my ALS diagnosis less than six months ago. But now that I’ve had some time to let things sink in, it’s time to make some noise.
Jason Walker believes his greatest accomplishments have come since his diagnosis with ALS – specifically, being a husband and a father. He met his wife, Annie, three years into his ALS diagnosis and they started dating a year later. They were married in 2014.
Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years. “I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”
David is originally from Rockwall, Texas, and is now on what he calls “an extended stay in New Haven, Connecticut.” He has lived with ALS for more than 15 years.
This is the first profile in that series, and it’s written in the volunteer’s own words. Michelle Reynolds Gray has been volunteering to help people with ALS in the St. Louis, Mo., area for more than six years. I met my first person with ALS in early 2012, a 59-year-old man named John. When we met, he was “locked in” and couldn’t respond to me in any way except with tears.
Young people across the country are embodying the “Raise Your Voice” spirit for ALS Awareness Month through the Iced Tea Challenge to support The ALS Association. Yesterday, Iced Tea Challenge campaign organizer Rebecca Wetzel appeared on the “TODAY” show to discuss how youth can be more involved in philanthropy and raising awareness for ALS.
People living with ALS eventually lose the ability to speak. That means that preserving channels of communication is an important component of enhancing quality of life. The ALS Association - DC/MD/VA Chapter took this to heart when they initiated The Esther Lerner Brenner ALS Assistive Technology Lab in Maryland, which is designed to help people living with ALS communicate effectively for as long as possible.
Our beloved daughter, Carmen Schentrup, was taken from us on February 14, one of 17 victims of the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla. Her life was cut too short. For the last month, we have tried to make sense of the senseless, and we have grieved with the other families.
The ALS Association mourns the loss of Dr. Stephen Hawking and commemorates his life and legacy. Hawking, a renowned physicist and best-selling author who famously studied black holes and whose life was depicted in the 2014 film The Theory of Everything, was diagnosed with ALS, also known as Lou Gehrig’s Disease, in 1963. The average life expectancy of a person living with ALS is approximately two to five years after diagnosis and only 10 percent of people survive for more than 10 years.
I woke up this morning to the terrible news that Stephen Hawking died. While I never met the man, and didn’t really understand all he was saying about black holes, I learned a lot from him about what is possible for people with ALS.
(This is the first article in a five-part series highlighting the 2018 recipients of The ALS Association Heroes of Hope Awards.) Mike Maloney is one of the reasons we provide care services to people living with ALS, advocate for legislation that greatly impacts the quality of life of those living with the disease, and fund research toward treatments and a cure for ALS.
As the dust settles on the passage of the new tax law, you may be wondering how it will affect your charitable giving. Supporters of The ALS Association give for a variety of reasons, but the added benefit for many donors is the ability to take charitable deductions if they itemize deductions on their tax returns. The new tax law will affect everyone differently, and many people are still working through what it may mean for their personal situation.
The Hollywood Reporter recently published a great article about new discoveries toward a cure for ALS, thanks to contributions and support from Nanci Ryder, veteran talent publicist, and her friends and supporters. Nanci has bravely fought ALS since 2014 and has enlisted the support of such stars as Courteney Cox, Don Diamont, and Renee Zellweger.
We wanted to clear up some misinformation floating around on social media regarding our research funding and our current assets. We also wanted to explain our approach to funding research.
In the summer of 2014, the ALS Ice Bucket Challenge inspired 17 million people to upload videos and raised $115 million for The ALS Association. Since then, The ALS Association has committed more than $94 million toward its mission, including over $82 million to fund research, and helped forge nine new global research collaborations.
Andrew Rea, a New York-based chef, filmmaker, and host of the hugely popular YouTube cooking show “Binging with Babish,” was hit hard when his friend, Garmt van Soest, messaged him to say goodbye during his final days. On October 23, Garmt passed away from complications from ALS.
