Welcome to Mark's Personal Page
ALS affects everyone differently and I have met people who have lived with ALS over 25 years, but have not survived beyond 25 years. Visiting with their families at the ALS Association Gala shows how that their infectious spirit lives on, inspiring us who remain to battle for them and for you as ALS could affect anyone. How they could endure the complications of ALS is heroic as I have discovered over the past few weeks. My acrobatic summersault on ice 8 weeks ago resulted in torn ligaments and tendons in my right elbow. Physical Therapy brings back memories of a long rehab after elbow surgery in 1979. I get to use my left arm for most tasks and if you want a glimpse of what life is like with ALS, try using your non-dominant arm for one day for all routine duties. Start in the bathroom brushing teeth, shaving, combing hair, and yes, the toilet paper thing! And then think about how you would do those tasks without control of either arm. You would need help - forget about any ounce of dignity! Then try eating, dressing, tying your shoes, opening a jar! Good Luck!
The good news is that your past donations are bringing us closer to technology and treatments to make it easier to deal with the challenges of ALS and hopefully a cure and I can’t thank you enough! At last check, there were 88 active clinical trials in the U.S. (I remember 1 or 2 when I was diagnosed). Your donations to Never Surrender have resulted in the following since 2020:
$ 3,301,000 to the MN, ND, SD, WI Chapters of the ALS Association
$ 500,000 to the Mass General Healy Platform Trial
$ 55,000 Essentia Health – Duluth
$ 50,000 Courage Kenny Northland
$ 55,000 Exploring a Vehicle Leasing Program
I just completed my 70th trip to San Diego since May of 2018 for Lumbar Injections of a drug called Tofersen in the Biogen SOD1 Clinical Trial. It can be rough, but my new doctor introduced me to “Spanish Guitar” on Spotify to help deflect some of the discomfort. I turned that on him requested that I play one song first and now he looks forward with great anticipation to my selection for that month’s injection. I started out with “Bad to the Bone” by George Thorogood. In subsequent months I selected “Cuts Like a Knife” by Bryan Adams, “Hit me with your Best Shot” by Pat Benatar, and “Back Stabbers” by The O’ Jays. With the big FDA decision pending on April 25th Linda came up with a song directed at the FDA - “I want a new Drug” by Huey Lewis and the News. I have 10 songs in my “Injection Playlist” after 10 months and welcome any suggestions! This has lightened the mood at Injection Time, but make no mistake, ALS is a Terrible Disease.
Solving problems during my insurance career for clients has compelled me to help find solutions to this terrible disease by getting involved in any way I can. My ALS doctor introduced me to Jen Hjelle, Executive Director of the ALS Association and I was elected to the Board of Directors of the local chapter. Advocacy work with our elected state and federal officials lead to many trips to Washington DC and new relationships were developed with people from around the country. I became a Research Ambassador for NEALS (Northeast ALS Consortium) and a member of the “I AM ALS” Community Review Panel. Last year I was selected for The CDMRP (Congressionally Directed Medical Research Program) Review Team, and a Patient Advisory Board Member for Blackrock Neurotech. Several other local and national organizations such as ALS TDI, A Race Worth Winning, Ales for ALS, Hops for Hope have garnered my support in a variety of activities. And of course, since funding is the catalyst for spawning new treatments, I will continue to raise funds for Never Surrender, Inc. and the Kolar Toyota ALS Fishing Tournament!
So, if you were able to brush your teeth or tie your shoes today, would you consider making a donation to fight such a horrible disease?
Why We Need Your Help...
I have witnessed this disease take control of families that became friends, watched how they battle as hard as they can, only to lose and see their loved one die. Your gift will help fund programs designed to help individuals living with ALS and their families. Your gift will also go towards research to find a cause and cure for ALS.
What Do You Do Next...
You can help simply by making a charitable contribution. It's as easy as a click of the mouse. Know that you are helping people with ALS live with as much dignity as possible. Know that you are making a difference in so many lives.
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