My name is Lorene Lee and I have ALS. Copy this link to watch my story on youtube: https://youtu.be/sV5ph1CLlYA
**Using assistive communication technology with a visual-tracking system, Lorene Lee used her eyes to compose the following message, one letter at a time. In Lorene’s testament to the hardship of communicating with this disease, grammatical errors were intentionally left unedited.**
The Vision : Making ALS a Livable Disease , on the way to a CURE
It's been over 11 years since my ALS diagnosis. Yes, I am still clinging on to this roller coaster. And can still advocate and help, once again, to wipe ALS off the face of the earth.
It's the least I can do, because I can.!! I am ALIVE.!!
This year I am dedicating my efforts to the people I remember, that went too soon . Mike Nakazano, Lynn Makela, Steven Phillips, Ron Ennes, Adele, George Brown, Ryan Farnsworth, Carl, Mrs Poon. Bubba Nakahili,
Recently, the ALS Association shared their goals from now to 2024. One is the advocacy for finding a CURE, their most important goal. And now it includes finding a way to make ALS a livable disease In the interim.
This is truly important for those who will one day get this shocking ALS diagnosis. This huge helping hand, gives you a fighting chance to "CHALLENGE "and even " KICK ALS in the ASS. "
Having ALS for 11 years , I know its going to be a HELL of a ride.
With sadness and madness, one day your voice might cease to exist, you might be in a wheelchair , you can not feed yourself, might have to have food pumped into your stomach. You can't blow your nose. Running water upon your body or face will be some thing of the past. You can't scratch your itch or get rid of that hair, irritating you, on your face. And, this might just be the beginning.!!!
And what about the huge cost of caregivers, the heavy emotional toll, on everyone around you, the cost of health care.?
Luckily we have the ALS Association, fighting and advocating behind the scenes. turn this page from more information about what they do.
And, like everything else, the ALS Association, golden west chapter needs support /donations to exist.
Actually in March of last year , I did visit the ALS clinic to discuss the difficult subject , the end of life. (challenges were ridiculous ). Needless to say it was tough for everyone in the room. Especially my husband. Kudos to the staff who must deal with ALS patients.
Please help me , to help others, not to ever have to go through this!!!!..... and reach my goal of $25, 000 . Please donate to lorene 's team , ALS Association golden west chapter. And thank YOU in advance! Lorene lee