ABC Affiliate in Boston Airs “Unlocking ALS” Special

 

Last night, WCVB, the Boston ABC affiliate, featured a half-hour show called “Unlocking ALS,” highlighting all the great work coming out of the Boston area in the fight against ALS. The show did a wonderful job covering all the progress that has occurred since the ALS Ice Bucket Challenge (ALS IBC), an organic online movement that catapulted ALS into the spotlight while raising $220 million worldwide. From the ALS IBC, The ALS Association received $115 million dollars, of which over $77 million has been dedicated to research. Peter Frates and his family were and continue to be instrumental in advancing this important movement.

Continue reading ABC Affiliate in Boston Airs “Unlocking ALS” Special

Every Bravery Adds Up

Jeanna Grammer lives in Tuscaloosa, Alabama. She is employed at a non-profit Hospice and feels so blessed in making a difference! Her true passion is being a voice for people with ALS by volunteering with her local ALS Association chapter and writing letters in her local newspaper.

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!

Unfortunately, she had to retire just two months later because she was unable to talk to insurance companies on the phone. She retired with over 25 years and the retirement celebration was fit for a queen! She wasn’t sad that day; she loved seeing all her friends, co-workers and family. She never lost her loud Italian laugh and it was heard many times at the celebration. Bravery! Continue reading Every Bravery Adds Up

Every Memory Adds Up

Megan Wilkerson lost her father, Dr. Walter Root, to ALS earlier this year. Her family’s story was recently profiled in a feature article in the San Antonio Express-News. In her #EveryDropAddsUp story below, Megan describes the value of the memories she was able to make with her father and family after his diagnosis.

My dad lost his battle to ALS on May 31, 2016. I had known this day would come since his diagnosis on January 5, 2015. We had our suspicions something “bad” was happening with Dad, but ALS was something that happened to ‘other people,’ not us. I had become aware of the disease due to the Ice Bucket Challenge in Summer ’14, but had NO idea what would lie ahead.

Our family decided to embrace the diagnosis and enjoy our lives together. Since there is no cure or effective treatment for ALS, we knew the likely hood of him being “cured” was dismal. 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.

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Continue reading Every Memory Adds Up

Every Thought Counts

Caroline Tredway’s sister, Nell Hardy, is currently living with ALS. In response to her sister’s #EveryDropAddsUp story, Caroline submitted her own essay, titled  “Every Thought Counts.”

Every Thought Counts

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.

I think of Nell when I do the simplest of things that are out of reach for her. Continue reading Every Thought Counts

Every Person Adds Up

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

A Different Kind of Ice Bucket Challenge

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

ANNOUNCING Every Drop Adds Up

Pat Quinn is a co-founder of the ALS Ice Bucket Challenge. He was diagnosed with ALS in March 2013.

Last year, I accepted a Webby Award in New York City for co-founding the ALS Ice Bucket Challenge. Acceptance speeches are limited to just five words, so when I went on stage I said:

“Every August Until A Cure.”

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Pat Quinn

Since then, this mantra has become a rallying cry of the ALS community. It’s been awesome to see the progress we’ve enabled since the Challenge soaked the world in August 2014. Continue reading ANNOUNCING Every Drop Adds Up