My new roles in the ALS Association

I want to devote as much energy as I can to the fight to defeat ALS and provide support to people with ALS and their caregivers, and the ALS Association has given me multiple opportunities to do this. I have now been asked to serve on their Public Policy and Communications Committees, and co-Chair the Patient and Caregiver Advisory Committee. There are a lot of issues to address and initiatives to pursue, and I hope to use this blog to share ideas and resources with others who are part of the ALS family. For now I’m still trying to get up to speed on all of the many issues I need to know more about. I’m monitoring and joining on-line forums for people with ALS to hear their concerns; reading up on the processes and policies of medical research and NIH grants; learning more about legislative asks we are pursuing; studying the literature on rare diseases; and mapping out the complex ALS political and social ecosystem, including relations between the many different advocacy and service groups working on ALS.


The 2019 Gonzo Golf ALS fundraiser

I’m not a frequent golfer, or a good one, but each summer since 1995 I’ve joined a group of friends who call ourselves the Gonzo Golf group for 4 days of non-stop golf in the Myrtle Beach area. We play 36 hours per day.  It’s exhausting and loads of fun, and we spend a lot of time giving each other a hard time. Not exactly your typical support group… I’m mostly ridiculed for my selection of meals at lunch, and so have earned the unwanted nickname “Cobb Salad.”

Last year I learned about my ALS diagnosis just two months before the golf trip, and I assumed that it would be the last time I joined the Gonzos, which made the trip bittersweet for me.  My friends were unaware of the diagnosis — I just told them I was limping because of some peripheral neuropathy the doctors were looking into.

Thanks to the slow progression of the disease, however, I was able to join the Gonzos again this month, and got in 6 rounds of golf over a long weekend.  I was walking a bit slower than a year ago, but felt great and even got in a few decent scores and a couple of birdies.  It meant a lot just to be able to play. My new goal is to play Gonzo Golf 2020.

What made the trip even more special is that the group decided to organize a fundraiser for the ALS Association around the golf outing. Each agreed to chip in a certain amount of money for every par or birdie any of us made over the course of the trip. The group  ended up raising $2,000! I am so grateful to all of them for this amazing act of generosity and support.

A big shout out to Richard Terry, Tom Kazee, Sharon Kazee, Larry Garloch, Kirk Karwan, Pat Kirwan, Sam Adams, Jim Wright, Charlie Slagle, Todd Hermann, and Thomas Hazel.  As always, thank you Tom and Sharon for letting us crash in your house and for all your hospitality. And special thanks to Richard for conceiving and organizing the fundraising.

The photo is missing Thomas, Sharon, and Pat — next year I’ll time the photo shoot better to make sure all of us are in it!

Advocacy time

I’ve been invited to serve on the board of the ALS-Association Public Policy Committee and have gladly accepted.  I’ll be attending the ALS national advocacy conference in DC next week and hope to play a very active role. First, I have a lot to learn about the agenda and strategy for lobbying for changes in laws and funding of ALS research. Stay tuned.

Good news at my most recent consultation

Since April 2018, I having going in for quarterly consultations and tests at the Carolinas ALS Center at the Neuroscience Institute in Charlotte.  These consultations are nerve-wracking affairs for persons with ALS, as we are always fearing learning about drops in our vitals or our muscle strength (I’ll write a separate blog entry about this).

I just went back in late May for a visit and am happy to report very good news.  I have not only been holding steady in my condition, but I learned from the ALS specialist, Dr. Benjamin Brooks, that most (not all) of my leg muscles have actually increased in strength compared to a year ago, in some cases significantly so. This is pretty unusual. I left the office very happy to be an outlier.

The ALS Center’s findings are the ones that matter the most, but they are not the only yardstick I use. Two other metrics I find useful in  measuring the progression of the disease have also been positive. One is a program called Precision Medicine Program, which  provides me with motion sensors that I wear for one week each month. The exercises I do as part of that program have also shown a steady increase in my leg velocity capacity over the past four months. The other metric is my own set of observations that I record — my measurement of my performance on the elliptical, stationary bike machine, leg weights, and walking to work. None of those has seen slippage over the past year.

I’ve learned that it’s important not to over-interpret these kinds of results. The disease has its own trajectory in each person, including temporary improvements or long periods of stability before a downturn.  But even so, getting stronger is a lot better than the alternative, so I was very pleased to hear Dr. Brooks’ clinical observations.

Why the greater leg muscle strength is occurring is unknown, for now.  The most hopeful interpretation, both for me and for other persons with ALS, is that my body is responding well to the new treatment (Radicava)  that  I’ve been receiving since September.  Radicava was only approved by the FDA in 2017 and we’re still learning about its potential in slowing or stopping ALS progression. It’s part of the bigger picture of a bunch of new therapies medical researchers are developing for ALS and other neurological diseases.

Thank you, and a note on “impact giving”

Friends and family have contributed an amazing $20,000 to “Ken’s Caucus” in support of the ALS Association’s May 2019 Walk to Defeat ALS fundraiser. Those funds will support research to find therapies to slow, stop, or cure ALS, and provide vital support to people with ALS and their caregivers. To all of you who contributed, a very heartfelt thank you!

I know that most giving to causes like “Ken’s Caucus” is done mainly as a general signal of support to the person with the disease or condition. Experts on charitable giving refer to this kind of contribution as “impulse” giving, as opposed to “impact” or strategic giving. The latter is viewed by experts as more intentional, more focused on achieving a specific impact.

I’d like to propose reframing your contribution to the Walk to Defeat ALS, so that you see it as impact giving and not just as a kind gesture — though the two are not mutually exclusive! The funds provided to the ALS Association today are arriving at a critical moment — a post “Ice Bucket Challenge” moment — when a whole generation of exploratory research made possible by the Ice Bucket Challenge is now producing promising leads on therapies that are in the pipeline for clinical trials and that are now competitive for NIH funding. ALS scientists are stating publicly that they believe a therapy to stop or reverse ALS will be developed within five years. This is huge. This is the moment for a big push to support research, both by private contributions and by the National Institutes of Health, the largest single funder of medical research.

Your contributions are critical and very well timed at this pivotal moment in the battle against ALS. You are a stakeholder in our collective public effort to defeat ALS. Every dollar of support we provide for the big push against ALS today is very much “impact giving.” Thank you!

the inaugural 2019 Ken’s Caucus walkers