Dr. Heidi Tarr Henson, a Massachusetts woman recently diagnosed with ALS, reflects on on in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.
This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter and members of congress representing the state of Ohio.
I am the legacy of Oscar Aukschun, who was a wood pattern maker and first generation American and a resident of Cleveland, Ohio who developed weakness of his hands and arms in 1943 around the age of 43 years. He was a hard-working father who provided for his wife and three children.
As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.
With heavy hearts, The ALS Association joins the ALS community in celebrating the legacy and mourning the loss of Pete Frates, who died Monday at age 34 after a seven-year battle with ALS. Pete lived a Hall of Fame life.
Eighty years ago on July 4, Lou Gehrig gave one of the most famous speeches in American history. His speech marked his retirement from baseball because of his recent diagnosis of ALS. Gehrig was honored by many on the field that day, and his number 4 was retired, the first time a player had ever had his jersey retired. The New York Times called it “one of the most touching scenes ever witnessed on a ball field.”
The ALS Association has always been committed to transparency, including providing complete and accurate financial information on our website. We continue to receive the highest ratings from charity watchdog groups tasked with reviewing our spending, fundraising, and management.
We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.
The ALS Association is launching a campaign to engage kids and teenagers in the fight against ALS, issuing the ALS Youth Challenge and celebrating the first-ever ALS Youth Action Day. Our chapters across the country will be partnering with youth organizations in their communities to identify future activists and philanthropists who will help to defeat ALS by accepting the ALS Youth Challenge.
Carmen Schentrup had a dream: a world without ALS. Her career aspiration was to become a medical researcher and to be part of The ALS Association’s work to cure ALS. Tragically, Carmen’s life was cut short in the horrific Parkland shooting. However, her dream to contribute to a cure is being realized in a significant way.
We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.
The ALS Association teamed up with a group of expert data analysts at Mastercard who spent more than 24 consecutive hours to help our national office and chapters gather insights into improving operations and strategies to advance our mission to find a cure 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.
On December 13-14, 2017, 52 people gathered in Charlotte, N.C., to discuss how to increase awareness and participation in the National ALS Registry, the only population-based registry in the country collecting information to help scientists learn more about who gets ALS and its causes. Researchers use the Registry in their studies to find possible treatments and a cure.
We always enjoy our time at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association. This year was no exception. We listened, learned, networked, got inspired, caught up with old friends and colleagues, and so much more.
People with ALS come first in everything we do. The ALS Association is dedicated to providing those fighting ALS, their families, and friends with the critical information, support, and resources necessary to live a full life and better meet daily challenges.
Earlier this month, The ALS Association was happy to travel to Dublin to participate in the 27th International Symposium on ALS/MND. The Symposium, the largest ever, brought together top ALS researchers and clinicians from all over the world. People in attendance, including those from The ALS Association, used the hashtag #alssymp during the event. Here are some of our favorites!
Our friend Ted Harada passed away this week. Many of you may have known him. Ted was first diagnosed with ALS in August 2010 and immediately became a tireless advocate, volunteer, and voice of the ALS community.