Steve and I wanted to send you a personal message this year. A lot has happened since he was diagnosed with ALS in January 2019. We’ve had to make some hard choices and others have been made for us. We moved “to town” because he’s no longer able to do the massive amount of yard work he loved. He’s still busy at our new place with the weed eater and blower. I get all the duties that require a person who has two functional legs. Steve no longer has those and is relegated to a wheelchair. A year is a long time in the life of a family affected by ALS. You can’t take any event for granted. COVID 19 put a screeching halt to most of our plans (and yours) this Spring , Summer and Fall. It’s funny how uncomfortable it is to hear that your event will just be postponed by a year. In the past, we would have said, “Oh great, we have something to look forward to!” Now we look at each other and say, “We probably should get a refund.”
There have been some bright spots too. The generosity of our family and friends who’ve contributed to our continued well being and quality of life since Steve’s diagnosis has been enormous. We’ve had people who’ve been there for us in ways too numerous to count. You know who you are. We adore you!
We were grateful for your contribution to the 2019 ALS Walk and hope you will consider giving again this year. We’ve seen first hand how these contributions help with research, pALS (person with ALS) advocacy and beneficial legislation. Steve will be participating in a new form of clinical research trial at the U.W. later this year. While we hope that he benefits from this program, we know that his participation will ultimately advance future ALS therapies. Currently, there are only two medications approved in the U.S. to help buy a pAL some time. They are minimally effective. It’s been about 80 years since Lou Gehrig died. That seems like a long time to have virtually nothing to offer pALS in the form of hope for a longer, more productive life. The cause of ALS is still largely unknown. The researchers are getting closer, but until they know the cause, there can be no cure. The bottom line is that it takes millions of dollars to research pALS genetic and environmental data, along with bringing potential drug therapies to trial.
Our 2020 goal is to raise $5,000 for the Steve’s Fans team. Steve and I thank you in advance for your contribution.
WHY WE NEED YOUR HELP
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.
That’s why we’re participating in the Walk to Defeat ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us?
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!