ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, December 31, 2013

The Rolodex - Part I

A few weeks ago I was invited to a meeting of patient/caregiver/advocates held by the Clinical Open Innovation Team at Eli Lilly and Company. Their goal was to get direct patient perspective on how clinical trials can be more patient-centric. I hope the day was as productive for them as it was energizing for me.

There were some nationally prominent e-patients there. It was easy for me to feel a little lacking and very star-struck. There was also a large contingent of Lilly staff members included and they stayed with us the whole day. I realize it’s not an easy thing to block a whole day to focus on a single topic in corporate America. It happened.

As we talked and listened, I mentioned that I have a pretty big Rolodex of ALS patients and caregivers. The day before the Lilly meeting as I tried to prepare some thoughts, I found myself wanting to reach for the Rolodex to get their opinions that I value so. Each time I wanted to pick up the phone or send an email, I got that awful feeling that you get when you realize that a trusted advisor or friend is no longer with us. ALS is a disease that provides a big Rolodex and lots of those terrible losses.

Regina Holliday was one of the participants at the meeting. I had known of her Walking Gallery project http://reginaholliday.blogspot.com/ and thought it was a wonderful idea. When I saw some of the Walking Gallery jackets in person at the Lilly meeting, I thought it was more than wonderful. It was "wow." It has an impact.

Here are more links to give you some insights into Regina and her work --
http://en.wikipedia.org/wiki/Regina_Holliday
https://www.youtube.com/watch?v=-kMy1OvDJcw

After the meeting Regina offered to paint my Rolodex. Her offer still makes me grin from ear to ear. Now it’s time to gather some information for her about a few of the ALS rockstars in my Rolodex whose wisdom I miss so.



Mom
She is truly #1 in my Rolodex and in my life. Mom was a good mother and a wonderful homemaker and a wise human being. I have a feeling that instead of a portrait that she would prefer that I include a picture of how she raised ALS awareness a few years ago on Pennsylvania Avenue in Washington – as part of the stunning Piece by Piece display. She so wanted to get the word out about ALS – a disease that outrageously is without a treatment. She left us with some timeless quotes for the fight against ALS, including "If you can’t cure me, then at least learn from me." Amen. We lost Mom to ALS in 1997.

Persevering (the online name for Rob Tison)

 
Persevering was a young father and a really smart statistician. He was smart about a lot of things. His abilities in statistics showed us that patients can sometimes find the weaknesses in peer reviewed articles and in clinical trial design. Rob was a relentless recruiter and advocate for clinical trials, and he managed to start conversations among scientists and physicians and patients and advocates who usually don’t talk to each other directly. Rob was a game-changer for the fight against ALS. We lost Persevering to ALS in 2012.

 
Happy Physicist (the online name for Ben Harris)

HP as I called him was another really smart scientist and young father who was slapped with an ALS diagnosis. He worked up until the end as a physicist on proton accelerators used in cancer therapies. He once told me that he designed equipment that took people within inches of their lives so that their cancers might be treated. He didn’t see why someone with ALS didn’t have the same right. His mantra was, "If it is done in secret, then it is done in vain." He wanted people with ALS who were trying things (and they all do) to be sure to document their data so that others might learn and the science might move forward. One morning I opened up my Wall Street Journal there was HP on the front page, written up as a citizen scientist trying to find something to treat ALS and to push the clinical trial process aggressively. He was smarter at science than most citizens and most scientists. We lost Ben to ALS a few months ago.

And in one of life’s coincidences (or perhaps a bit of kismet?), Rob, Ben, and I all had dogs named Otis.


bbzinger (the online name for Barbara Brenner)

I first e-met bbzinger during a tweet-chat led by USAToday. She was the leader of Breast Cancer Action and that was the topic of the chat. She also had recently been diagnosed with ALS. I learned so much from her about the differences between advocacy and activism and about the ways organizations need to be challenged. She was an ALS clinical trial volunteer and kept her commitment to that trial even though it didn’t seem to have fair or transparent rules for her situation. She was a very smart attorney who was driven to make a difference with the FDA and organizations and the way diseases are fought. Her blog at barbarabrenner.net also taught us much about dying. We lost bbzinger to ALS earlier this year.

Pdwyer (the online name for Pat Dwyer)

Pat Dwyer was simply a great guy. Perhaps that’s not really so simple. Pat was a husband, father, and had a commercial fishing business in Seattle. He and his wife searched and found a clinical trial for a Diaphragm Pacer with the help of Dr. Google. They became a wonderful resource for people online seeking advice on the DPS and ALS in general. Their attitude was simply that ALS picked the wrong family when it picked on theirs (yes, another one of those "simple" things that’s not so simple in real life). His wife and young-adult children and relatives and in-laws and friends carry on the fight, having lost Pat to ALS in June. At his funeral the church was literally jammed with all kinds of different people with one thing in common – they loved a great guy named Pat.


The Rolodex - Part II to follow tomorrow, New Year's Day.

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