Deborah Silver, an accomplished vocalist and performer, has been active in the fight against ALS since 2009 when her sister was diagnosed with the disease. My sister, Marjie Block, was diagnosed with ALS in 2009. I was by her side visiting doctor after doctor hoping to get any diagnosis other than ALS. We even prayed for Lyme Disease….anything but ALS! Ultimately, this unfortunate diagnosis stayed the same and Marjie’s courageous battle began.
Following up on our June 2016 blog post about edaravone, an intravenous drug therapy produced by Mitsubishi Tanabe Pharma Corporation, locally based in Jersey City, N.J., with a head office in Osaka, Japan, there has been recent news as to the status of the drug in the U.S.
As my dad's health declines it's gotten a lot harder to "keep on keepin' on." I've decided to share my perspective so that maybe other people can know they are not alone in their battles.
In July 2016, The ALS Association invited members of the ALS community (defined as people living with ALS, family members, and caregivers) to participate in a community care services survey. This survey included 15 questions and was shared via several of The Association’s communication channels. Nearly 800 members of the community responded.
My mom was diagnosed with ALS in May 2011. She literally lost her speech within 6 weeks of slurring her words. She was semi-retired but enjoyed her job and co-workers, so she still worked part time at a hospital as an insurance biller. Bravery!
My dad chose to live with his disease, even though we lost him a little each day. He traveled, he loved, he laughed, he lived. I can honestly say (with many tears) he lived 100 years in his 59.
Picture, for a moment, that you’re in a straitjacket. You can’t move any limb to free yourself. All day and night long. That’s how I imagine my younger sister Nell has felt over the past seven years as she battles the biggest foe of her life: Amyotrophic Lateral Sclerosis, or ALS.
From the time I was a small girl I knew that my grandmother, Mildred Anderson, died from complications resulting from ALS. She died in February 1960, when my mother was preparing to give birth to my older brother. One of the big regrets of my mother’s life is that her mother never got to meet her four children and see what wonderful people they became. It is not just every person that has ALS that adds up, it is all the people in their lives and those that come after them. It could be said that “Every Family Adds Up.”
To point at a day on the calendar as the best and worst day of your life is a rare feat. On May 27, 1985, my wife was born - best day of my life. On May 27, 2016, I was told I'm dying - worst day of my life.
The exciting finding that reduction of a single protein, SUPT4H1, specifically reduces toxic gene products associated with C9orf72 long repeat expansions, gives researchers a new potential therapeutic target.