Julie Fitzpatrick’s grandmother (above left) died of ALS and Julie (above right) has recently been diagnosed with Primary Lateral Sclerosis. Julie lives in Reston, Virginia and is a scientist, specializing in human health risk assessment, for the U.S. Environmental Protection Agency.
ALS changes countless lives. It is nearly impossible to count every person. It is not just the people with ALS, but everyone they touch and everyone who touches them and on down the line.
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.” Continue reading Every Person Adds Up
Adam Smith, 37, was an overly active person until a mysterious, undiagnosed illness turned his life upside down. He saw multiple doctors until one realized the problem was not in his head, but very real. After a trip to the Mayo Clinic, Adam was diagnosed with Lou Gehrig’s Disease in May 2016. After his diagnosis, Adam sent the following letter to his friends and family. He is supported and loved by his wife, family, friends, and sweet Akita.
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.
“You have Lou Gehrig’s Disease. There is no treatment, there is no cure. I’m sorry, Adam.”
Mayo Clinic, Rochester, MN
May 27, 2016
As my doctor delicately explained that my body will slowly become paralyzed over the next 2-5 years until I can no longer take a breath, my thoughts drifted to my wife and our families. Turning 31 and being told your husband is dying is unimaginable. I could only think how every birthday for the rest of her life she will have a painful memory that will never fade over time. Thirty-one is too young to be told you’re going to be a widow. It’s too young for dreams to be crushed and vows to become impossible to achieve. Thirty-one is too young to be told you’re going to be taking care of your sick husband for the rest of his short life. Heartbreaking. Continue reading “Me, You, and Lou” – A Letter from Someone Newly Diagnosed with ALS
Researchers supported by The ALS Association announced that they had identified a new protein called SUPT4H1 that has potential to be used in therapy development for people whose ALS is caused by the C9orf72 gene. This research was published in the journal Science by Drs. Aaron Gitler at Stanford University in Stanford, California and Leonard Petrucelli at the Mayo Clinic in Jacksonville, Florida. Read on to learn more about this latest discovery.
Drs. Gitler and Petrucelli targeted SUPT4H1 since it was shown that reducing its presence decreases the production of proteins containing long repeat expansions associated with another neurodegenerative disease, Huntington’s disease. However, reduction of SUPT4H1 did not affect expression of normal, non-expanded proteins. Continue reading Researchers Identify a New Therapeutic Target for C9orf72-Associated ALS
This post, written by third year medical school student Jeremiah White, first appeared on Transforming Medical School, the student blog of the University of South Carolina School of Medicine Greenville.
We’re nearing the two-year anniversary of that time when countless videos flooded your social media feed of people dumping buckets of ice water on themselves—the Ice Bucket Challenge, it was called—all to raise awareness for a disease called ALS, otherwise known as amyotrophic lateral sclerosis, or Lou Gehrig’s disease. You may have even participated in the challenge, as my medical school did. I remember the afternoon prepping for it. My inner junior-high boy came out in full force, trying to scavenge around the house for the biggest “bucket” I could find. Because, of course, if I was going to do this, I needed to do it right: with as much freezing-cold water as I could somewhat reasonably dump over my head. I searched the house high and low. I needed something big. “We’ve got a large mixing bowl in the kitchen,” I thought. Bigger. “I could use that cleaning bucket under the sink.” BIG. GER. “The trash can. Perfect.” Yes, I emptied (and cleaned) my trash can and filled it all the way with ice and water. Even threw a little salt in there to make it super cold. I lined up with my colleagues, and one-by-one in wave-like fashion we proceeded to pour the contents of our buckets over ourselves. Continue reading A Different Kind of Ice Bucket Challenge
Kevin Gosnell, founder of ALS ONE, passed away on Monday because of complications from the disease. Gosnell was diagnosed with ALS in spring 2015 and immediately put his business acumen and CEO leadership skills to work, convening the best minds in the ALS community. He founded ALS ONE in January 2016 and brought together leading neurology experts and care specialists from Massachusetts in partnership to leverage their institutions’ strengths to expedite progress toward finding a treatment for ALS within the next four years. Continue reading ALS Entrepreneur Kevin Gosnell Passes Away Leaving Important Legacy in ALS ONE
[UPDATED AUGUST 25] We’ve updated this post with more of the #EveryDropAddsUp stories you’ve submitted!
The ALS Ice Bucket Challenge showed us that when small things add up, they can make the impossible happen. As part of our #EveryDropAddsUp campaign, we’re asking YOU to share what things add up to make a difference in your life. Below are some of the responses we’ve received so far. If you’d like to submit your own “Every _____” story, take a look at our Submission Guidelines or leave your response in the comments section!
Continue reading Every ____ Adds Up: Your Responses
This August, we’re sharing stories of the individual actions that add up to make a difference in the lives of people living with ALS. Today’s story comes from Nell Hardy, pictured above at the 2016 Walk to Defeat ALS in Manhattan with her three sons, Brendan (left), Connor (middle), and Emmet (right). Her fourth “son,” Rico, is perched on her lap, which is his favorite spot to spend every day. Nell and her family are also featured in our Every Drop Adds Up video, crossing the finish line together.
Every day adds up!
I’ve been partnered with ALS for eight years.
It is not a gentle companion.
The disease is progressive and exacting.
I haven’t eaten food or talked for five years.
I can’t laugh, sing, or scratch an itch.
But I think I am winning.
Somewhere between my first bout with pneumonia and the blood transfusion for low iron, I put down my weapons.
The disease was too cunning and huge for me to take on!
Instead, I practiced acceptance and hope.
As the disease whittles away at my 5′ frame, I gather my friends and family around me.
We believe, we are patient: there is a cure.
Life is too good to give up.
We want to hear from you, too! How would you fill in the blank? “Every ___________ adds up.” Tell us about your ALS journey and your commitment to advance the fight against ALS. Tag your answer on social media with #EveryDropAddsUp or send us a blog post!