Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great.
Avi works closely with The ALS Association, fundraising to ensure all people living with ALS have access to effective treatments and care. Almost completely paralyzed and unable to speak, he communicates by typing using small head movements. “My campaign to help find treatments and a cure is done primarily through a computer,” he says, “but my life is filled with joy, and I am living with 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.
The impact of ALS on breathing is likely one of the most daunting aspects of the disease journey and one for which you and your family can and should prepare for early on. There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved.
Over a year ago, Sophia Harding became a volunteer for The ALS Association, a fourth-generation member of the Barnett family to join the fight against ALS. In the midst of the COVID-19 pandemic, she moved to Florida and joined the team at The ALS Association Florida Chapter as a Phone Friend Volunteer.
We talked with Dr. Marion Sommers-Spijkerman, postdoctoral fellow from the Netherlands, to learn more about her research focused on developing and evaluating a guided web-based self-compassion intervention aimed at reducing self-stigma in people living with ALS and their primary caregivers.
Manis Mullarkey I Jane Ann Mullarkey I Cavy Brennan I Kate Brennan I Kate Drakulic
Anyone who knows this group knows two things to be true...
They love to run.
They are passionate about finding a cure for ALS.
On Saturday, October 23, these cousins will run the Door County Fall 50 relay race as a team combining their love for running to raise awareness and funds to support the ALS Association Wisconsin Chapter.
Navigating the world of healthcare and insurance, especially Medicare, can be very complicated and overwhelming. It's important to make the right decisions when it comes to health insurance plans and to understand the available options that could impact the critical care you need.
Thanks to the tireless work of ALS advocates, people diagnosed with ALS who already qualify to receive SSDI benefits are immediately eligible for Medicare as well. That makes Medicare open enrollment an important window of time for the ALS community.