The recent ruling by the Supreme Court to overturn Roe v. Wade is a wakeup call for all of us who care about the rights of people being able to make decisions about their own healthcare. No matter your political perspective or leanings, any erosion of the rights for individuals and their loved ones to set the course for their own treatment in consultation with their medical professionals is of great concern.
Every year, hundreds of people with ALS, their caregivers, friends and family come together to discuss progress in the fight against ALS and how we advance ALS research, accelerate the drug development process and make it possible for people with ALS to live their lives as they want by engaging policymakers to support the ALS community. Registration is now open for our annual advocacy conference, which will be held June 14 -16 from 3:00-4:30 p.m. ET. Due to visitor restrictions at the U.S. Capitol Complex, the event will be virtual again this year.
In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 14th profile in that series.
“I raise my voice for the people who can’t. Someone I love was affected by ALS, so it affected me as well. I say what I [feel] the people who lost their communication abilities would want to be said,” 13-year-old Sophie Rubin said.
“Shortly after being diagnosed, I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”
More than 1,200 participants, volunteers, and members of the community came together for a family-friendly day of celebration, exercise, education, awareness, music, food, and family fun at The ALS Association Golden West Chapter’s 14th annual Napa Valley Ride to Defeat ALS and Walk on Saturday, September 22.
Please join us in congratulating Team Challenge ALS for winning last night’s thrilling 2-OT semifinal victory in The Basketball Tournament, a 5-on-5, single-elimination basketball tournament.