I’m hopeful because when my father left us, he left a piece of himself with me, and I’ll do everything I can to raise as much money and awareness as possible so that those three letters - A L S - are no longer considered a death sentence.
This week the Lightning Foundation and the Lightning Community Heroes program honored Gary Dassatti for being a courageous, selfless, and noble leader who has championed the fight against ALS
We recently spoke with Kathleen Poirier - wife, mother, and a person living with ALS. Kathleen and her family live in Florida and have been very involved with The ALS Association Florida Chapter. Here is what Kathleen had to say about her family’s journey with ALS in her own words.
People living with ALS eventually lose the ability to speak to their loved ones and friends. In partnership with Prize4Life, we initiated the ALS Assistive Technology Challenge to improve the lives of people with ALS.
Jeff passed away in 2006, after battling for three years. It was a quick ending to a long journey; my family saw him three weeks earlier, then he was gone. Looking back at it almost 10 years later is still difficult, no one likes to think of their loved ones dying, but also it’s been a time to be thankful ALS came into my life.
Dr. Heidi Tarr Henson, a Massachusetts woman recently diagnosed with ALS, shares her reflection on how to handle life with ALS and end of life discussions.
The fight for the Genetic Testing Protection Act in Maryland continued Thursday with ALS Association leaders pressing the state’s House of Delegates to advance the policy. The bill would prohibit companies that offer life insurance and disability insurance in that state from using the results of genetic testing to deny coverage or engage in price discrimination. Similar bills have been proposed in New York, Illinois and Tennessee.
Ricky and Carole Neal met on July 4th, 1985 at a car crash scene and experienced what some call "love at first sight." In the face of ALS, the couple moves forward together building mountains of support around them.
Sophia Harding is a Phone Friend Volunteer with The ALS Association Florida Chapter. She volunteers in honor of her great-grandfather who was the first chairman of The ALS Association.
Through the generous support of our donors, we invest millions of dollars in research every year, providing needed support to ALS scientists around the world. From pilot projects to global collaborations, we fund experts dedicated to advancing the search for new ways to identify, prevent, treat and one day cure ALS.