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Lorene Lee

It has been more than 11 years since my ALS diagnosis. I am one of the “lucky” ones living with ALS, who has surpassed the usual five-year survival rate. Yes, I am still clinging onto this roller coaster, and can still advocate and help to wipe ALS off the face of the earth.

It started in 2010 while I was at work as a dentist assistant. I was taking care of the dental instruments and called my boss over to look at two of my fingers moving by themselves. After these first symptoms, I knew by the series of tests the doctors performed that I was due to hear some serious news. My husband of nearly 34 years, Tony, took my diagnosis the hardest, but he has also been my rock in this fight.

Having ALS for so many years, I can tell you that it is a HELL of a ride of sadness and madness. One day your voice might cease to exist, you might be in a wheelchair, you cannot feed yourself. You can't blow your nose. Running water upon your body or face will be something of the past. You can't scratch your itch or get rid of that hair, irritating you, on your face. There is also the heavy emotional and financial toll on you and many who are close to you.

Luckily we have the Golden West Chapter fighting and advocating behind the scenes. And, like everything else, the Chapter needs financial support to exist. This is truly important for those who will one day get this shocking ALS diagnosis. The Chapter is a huge helping hand that gives you a fighting chance to "CHALLENGE” and even "KICK” some ALS.


When we first got involved with the Golden West Chapter, we found an incredible group of people and support, and with that came many opportunities to share our story and raise awareness through the Chapter’s community outreach events. Whether it is the Chapter’s Walk to Defeat ALS and Team Challenge ALS events, occasions hosted by the Young Professionals Group, awareness campaigns like Voice Your Love and awareness days arranged by the Chapter in collaboration with community partners like Major League Baseball, and the annual Champions for Cures and Care celebration too – Tony and I have been there for it all to share our story for everyone who will listen.

And people DO listen and care! When my husband was working as a City Parks and Recreation employee, he began sharing event flyers among the whole department, which meant hundreds of people got introduced to the fight to defeat ALS because of him. The flyers Tony passed out by hand brought major success, and to date, our team has raised close to $200,000 thanks to his efforts, as well as the support of my ohana, friends, and others in our ALS community.

I am so grateful for all the heroes in my life, including my beloved dog Hiro who always keeps me warm and makes me smile! I especially want to publicly say thanks to my two children, Andrea and Brian, my family and caregivers and of course, Tony. It takes a village to fight ALS, and I couldn’t do this without the support of the community around me.

ALS is a terrible, awful, deadly disease. Tough, sad, ugly, heartbreaking – yes. A learning experience – YES. Each year, I dedicate my efforts to raise awareness in honor of all the people I remember that went too soon. Please help me help others, so no one else ever has to go through this! Please donate in support of the ALS community and the mission of Golden West Chapter. Thank YOU in advance!

It is only together that we will defeat ALS.

Much aloha,
Lorene Lee
Living with ALS since 2010
Lorene's Team
(Typed by eye movement on an eye-tracking device)

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