For nonprofit entities like The ALS Association, the filing of its Form 990 tax return is also an important tool to communicate the good stewardship and judicious financial management the Association has demonstrated while working toward its mission of creating a world without ALS.
The ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND and safeguards against genetic discrimination. Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge.
After watching his Aunt Christie battle ALS for more than nine years, twenty-one-year-old Ryan Wilson was determined to find a way to honor her fight and make a difference for the ALS community. So, he decided to ride his bike from Poughkeepsie, NY to Miami, FL to help raise awareness and funds for ALS research.
We recently talked with Cierra Abbott, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and what her future plans are.
The ALS Association is accepting applications for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
My interest in photography began when I was the high school yearbook photographer. I really don’t know why I volunteered because, at the time, I didn’t even own a camera.
Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.
We recently spoke with JoCarolyn Chambers, care services manager at The ALS Association, to learn more about her experience in the field of grief counseling, how to handle these difficult and sensitive conversations about loss and the advice she has for people impacted by ALS.
People with ALS often lose their ability to speak. For some, this change happens quickly; for others, this change may be more gradual. In any case, it’s important for people with ALS to consider voice banking and/or message banking as soon as possible after diagnosis, while they still have their strongest voice possible.