2021 Ski to Defeat ALS - ORSWW

GO BIG

 Dear Friends and Family –

Growing up my Dad taught me to GO BIG!
My Dad was a coach to all- in life, in hobby, and in sport.
I began skiing before I began walking. This father-daughter activity quickly evolved from a terrified 2 year-old being carried down the mountain to a little girl racing down black diamonds. Not only would we GO BIG on the mountain, but my Dad exposed me to every ‘lifelong’ sport in the book; from roller skating to ice skating to windsurfing, wake-boarding, swimming, running and golf. A man with such well-rounded physical and athletic ambition was later forced to a screeching halt when diagnosed in 2006 with Amyotrophic Lateral Sclerosis, ALS.
Despite his rapidly- declining athletic body, this reality did not falter his headstrong attitude. We created this team to embody my Dad’s larger- than- life personality. It is my goal to continue GOING BIG in honor of his lasting legacy.

GO BIG- A PERSPECTIVE TO GUIDE ME THROUGH MY DAILY LIFE- ON AND OFF THE MOUNTAIN.

Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal, neuromuscular disease that slowly robs a person of their ability to walk, speak, swallow and eventually breathe. The life expectancy of a person with ALS averages only 2 to 5 years from the time of diagnosis. In a very short period of time, the person and their family need a plethora of services and support. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. This crippling disease can strike anyone.

Ever since my Dad was diagnosed with this hereditary and fatal disease, I have dedicated my time to make an impact in trailblazing the path towards a cure. As each year commences, the selfless scientists, including Dr. Joseph Beckman at Oregon State University, continue their efforts towards uncovering a cure. The time is NOW to end this cruel disease.

Thank you so very much for your support. Team GO BIG has signed up for the annual 2021 Ski to Defeat ALS at Mount Hood Meadows to continue to help the ALS community in loving memory of my Dad, Regan Carter.

It’s been 13 years since we lost him to ALS. This drastic life event has completely shaped who I am today. My Dad was an incredible man who lived large and I strive to continue his GO BIG legacy in my daily life. Through 15+ years of involvement with The ALS Association, I have gotten to see firsthand how donations make a difference in the care services provided to those living with the disease, as well as, the incredible and exciting ALS research efforts happening in our own state and around the world!

This year marks the 7-year anniversary of the Ice Bucket Challenge! The social media phenomenon that swept the nation and raised $115 million during an eight-week period. Nancy Fretes, mother of the man who started the Ice Bucket Challenge said, “The Ice Bucket Challenge was a game changer. It showed us that when each of us contributes – even just one small act – it adds up and accelerates our pathway towards a treatment for ALS. “

Nancy is right, all these small acts and donations have added up, and great progress has been made in the last seven years. Five new genes have been discovered, which are linked to ALS. These discoveries will help spur new therapies. The ALS Association has dedicated $84 million to research, amongst 150+ researchers in more than 11 countries around the world, to advance the search for treatments and a cure, but we cannot stop there.

It costs $2 billion dollars to bring ONE new drug to market. That is 17 Ice Bucket Challenges that need to happen to develop one new drug. Your support is urgently needed, to assure we can find treatments, and eventually a cure for ALS so someday no one will lose their battle to ALS like my father did. Our family is eager to continue to GO BIG to support and accelerate research efforts!

During my time at Oregon State, I was lucky enough to get to know and observe the lab of Dr. Joe Beckman, a world renowned ALS Researcher conducting his research at OSU. Dr. Joe Beckman is aiming his studies at understanding how oxidative stress, superoxide dismutase, and zinc are involved in ALS. To this end, Dr. Beckman and his team are using a copper compound called Cu-ATSM, a form of copper that accumulates in hypoxic tissue, to deliver copper to motor neurons. This drug has proven effective in the laboratory and is showing hopeful results in clinical trials to see what the therapy looks like in humans. Dr. Beckman's work, along with the many other dedicated ALS researchers, have seen hopeful advances this past year:

· AMX0035: In its clinical trial, AMX0035 slowed the progress of ALS in a statistically significant and clinically meaningful way. Now, we are trying to bring AMX0035 to market as soon as possible. This drug could mean the difference between a person with ALS being able to feed themselves versus being fed, or the difference between needing a wheelchair versus not needing one.
· HEALEY ALS Platform Trial: This initiative will lead to new ALS treatments at a faster rate. During clinical trials, many treatments will be tested at once. It reduces cost of research by 30%, decreases trial time by 50%, and increases patient participation by 67%.
· Arimoclomol:This treatment triggers heat shock proteins that are involved in the body’s response to stress. Studies show it may slow the progression of ALS. This therapy has completed clinical trials, including sites at Providence and OHSU. It has received Fast Track status from the FDA; if the review is positive, we hope it will be available soon.
· The ALS Disability Insurance Access Act was passed in Congress. This eliminates the five month waiting period that ALS patients had to endure before getting their social security disability benefits.
These are very exciting times for ALS research – with your help, we will continue to enhance the efforts and get closer to treatment options and a cure. Join us for a virtual take on the Ski to Defeat ALS during the months of March and April 2021. With current COVID restrictions, we will not be able to gather this year. There are a limited supply of lift tickets at Mt. Hood Meadows for specfic dates this season. Reserve your spot on the mountain at the deeply discounted rate. Tickets are first come, first serve and priced at an early bird special of $70 each, through January 18th! Registration for season pass holders is free! This pass includes;

We just ask that you register online and fundraise $150 to contribute to the ALS Association goal of $72,000 that will go towards this critical mission.
Looking forward to rallying together to fundraise and enjoying a day of skiing at Mount Hood!

Claire Carter

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