In August 2013, one year after the 7 mile race that convinced me I was sick ( see http://wp.me/p3lGN4-2), I completed it again. With a kevlar brace on my right foot, and niece Emma accompanying me, I used my amyotrophic jog, 2 minutes jogging, 4 minutes walking. At the bail out point 4 miles in, I felt OK so we continued. By the end in Falmouth Heights, I had an entourage of over a dozen family and friends alongside. I was the last guy to cross the finish line. My best race ever, although the wheelchair in 2014 with Max pushing was easier for me. I wanted to prove that no matter what happens, we can still try our best and achieve difficult goals.
Category Archives: Prose
BIO Convention 2015. Michael Gollin remarks on innovation
I was invited to speak about patents at the Biotechnology Industry Organization Convention in Philadelphia. I couldn’t go. Instead they showed questions 1 and 7 from my MDA video interview here, and the following remarks were read by ten colleagues/clients/friends. Very touching.
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I wish I could be there at BIO with you in person. It’s always an honor to speak there. Unfortunately illness is stealing my abilities one by one. Anyway I’m glad to have this opportunity to share my thoughts and feelings about innovation, thanks to the power of written text.
I have a confession to make. I love my job. I’ve been a patent attorney for over 30 years and for more than half that time, I’ve been a partner at Venable in DC. It’s a wonderful firm of excellent lawyers focused on great client service performed with good cheer and collegiality. My firm has a strong community spirit and everyone has a sense of humor or at least puts up with it. We also have the best bocce players in the profession and we challenge any of you to a match on our rooftop bocce court.
My job, simply stated, is to help people put their ideas to work, to heal, feed, and fuel the world and make life more enjoyable and productive. Bringing new ideas forward is difficult and uncertain but it is an honest living.
I’ve done all kinds of patent work for all kinds of clients, collaborating with many colleagues, and I’ve learned a few lessons along the way.
• I’ve prosecuted patents on recombinant DNA, synthetic genomes, vaccines, pharmaceutical compounds, immunoassays, gene therapy, insect-based protein production, medical devices, and grain crops. The Inventors come from all over the world and whether they are humble or arrogant, they share a passion to use their wits to improve the world. Success with a new biotechnology is arduous, improbable, and expensive, and globalization complicates things even further. Individuals and organizations would not dare to try to bring their inventions forward without patents. I’ve seen investors back out of promising technology because of failed efforts at patent protection.
Licensing and transactions taught me how valuable patents can be. Although most inventions go nowhere, the few that get commercialized can make their owners very wealthy. I’ve always felt that these biotech park people deserve success more than wall street.
• In litigation I learned that accused infringers are just as passionate about their right to use the patented technology as patent owners are about excluding them. Patents have limited scope and duration and it should be no wonder that these disputes are fought so fiercely, in the US and around the world.
My appellate work, including amicus briefs for BIO, confirmed the subtlety of patent law and the far reaching effects of changing doctrine. In my view, the past few years have brought an unfortunate confusion to patent law, particularly the supreme Court’s holdings on patentable subject matter.
Internationally, I’ve represented research institutions all over the world and have been heavily involved with biodiversity. People everywhere want to put their ideas to work but most lack the expertise. So i started PIIPA, public interest intellectual property advisors, to leverage the volunteer pro bono skills of IP attorneys to help developing country clients. We have a network of thousands of volunteers. Unfortunately most donors have trouble seeing the connection between IP and economic development.
I’ve used my experience and insights to create a course in business and law school on IP strategy. Surprisingly, students who begin as IP illiterates can provide competent analysis after one semester. The key is to focus on each aspect of IP, in each sector, as part of a dynamic balance between exclusivity and open access. An example is the transition from branded drugs to generics when patents expire.
My book and other writings explore these topics in depth.
All this has taught me the simple lesson that patents are not simple. Yes, the patent system is complex and changing. We should not accept efforts to oversimplify it. I may even be guilty of simplification in these brief remarks. My hope, anyway, is to convince you to help reduce IP illiteracy by teaching what you know and challenging people who oversimplify.
A final note. I have had ALS for about three years. It’s no picnic to deal with an incurable progressive terminal disease. You can bet I’m eager to accelerate the search for a cure and from what I’ve seen we are entering a golden age of research into curing neurological disorders. Weakening the patent system won’t help me or future victims of this disease. Every one who cares about cures should be prepared for a constant struggle, decades and even centuries long, to keep patents working to drive innovation.
As I said, I love my job, and sharing these thoughts is an important part of my responsibilities. Thank you for your attention.
Award for advocacy
I was happily surprised last Monday to receive the ALS Association Rasmussen advocate of the year award. Jill and ALSA’s Steve Gibson tricked me by saying I should prepare a few remarks for the luncheon. I was a bit suspicious when three of my partners from Venable showed up, but the firm has been honored by ALSA for a massive ice bucket challenge involving nearly 100 people last year, so they fit right in with the DC/MD/VA chapter tables among 700 people from across the nation.
Eventually the introduction clued me in. For the first time I rolled up to a stage. Jill helped me receive the beautiful crystal award from CEO Barbara Newhouse. Fortunately I had typed “can you hear me” in my Speech Assistant talking app because it took a while to get the microphone working. Then I ran my speech.
I savored the standing ovation joyfully, with gratitude, and compassion for the crowd of people with ALS, caregivers, survivors, and supporters. Perhaps it was vanity that made it hard to leave.
Unable to say thank you, I smiled and nodded to those who congratulated me afterwards as I made my way to a gathering of people with ALS, most in wheelchairs, for a photograph. We were quite a mob.
We are not alone
Remarks to the ALS Association annual advocacy conference
Thank you to the ALS Association for inviting me here. My name is Michael Gollin and ALS took my voice last year, but not my will to speak.
Remember. I am not alone. You are not alone. We are not alone.
I believe the best way to pursue happiness is to find a cause, a purpose in service of the greater good. I’ve been antiwar, pro environment, pro civil rights, pro democracy, pro science and pro innovation. I’ve tried to be a productive member of all my communities. Family, friends, work, home, country, and planet. I’m a big fan of creativity and being a patent attorney advocating for my clients came naturally.
When I was diagnosed with ALS, I was dragged, kicking and screaming, into this new community and I quickly resolved to make the best of the situation.
I started a blog and wrote this haiku poem:
Terrible news, but,
I’m mining silver linings.
Play the cards you’re dealt!
Advocacy has helped me play my card hands. Promoting a larger cause is a big part of feeling empowered, proud, and full of purpose during a most difficult time of life.
Here is some of the advocacy that I’ve done since my diagnosis in October 2012.
February 2013 testified to FDA in favor of accelerating approvals for ALS drugs.
May 2013 and 2014 ALSA advocacy on capitol hill.
Summer 2013 I developed a complete business model for a non profit ALS alternative therapy patient information resource.
November 2014 I testified in the house of representatives for ALSA in support of the modern cures act.
I took on pro bono representation of MDA, helping them improve their intellectual property policies. With colleagues at my law firm, Venable, we took on some lobbying work for ALSA and also advised the local chapter on corporate issues.
Also I participated in 6 clinical trials, completing 2.
Writing about my feelings, thoughts, and experiences has helped me keep my sanity. I publish poems, essays, and advocacy information. This has kept me connected and given me purpose. I get lots of solidarity both from people with ALS and the support community.
I have readers all over the world, including a big following in Brazil, because ALS is a worldwide disease.
Please visit my blog. It’s called. Innovationlifelove.org. And please be as active as you can in advocacy.
Remember. I am not alone. You are not alone. We are not alone.
Thank you for your attention.
Game
Raising kids is a game of life. If you’re playing you’re winning.
ALS patients press FDA for quick access to controversial biotech drug – The Washington Post
This is a good even handed report about Genervon efforts including social media to win fast track FDA approval for GM604 for ALS. I’ve been pushing for faster review but Genervon hasn’t published any real data, just a public relations campaign which falls short of science. They’ve exasperated their clinical investigators at Columbia and Massachusetts General.
It wouldn’t take much for me to want to try it. But it will take something more than a prayer.
Pursuit of Happiness No. 4: Decision-Making 101
Pursuit of Happiness:
Decision-Making 101
Michael Gollin
March 2015
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Good decision-making contributes to happiness.
Here’s how to make good decisions and avoid paralysis and delay while collecting too much information (indecision) or deciding with too little information (impetuousness). Follow these steps.
1. Based on what you know, what would you decide?
2. Is there any information available that would change your tentative decision?
3. If no, decide and act. If yes, get that information, consider it, and repeat the process.
You will find it easier to make a tentative decision in step 1 with practice and growing confidence in steps 2 and 3.
If you still can’t get past step 1, flip a coin and see how you feel about the random decision. You are free to change your mind until you finish step 3 and act to make a commitment.
It becomes natural after a while. I try to follow this approach with career and job decisions, purchases, financial decisions, travel, health decisions, parenting, you name it.
Happy decision-making!
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News: This Oscar Belongs to the Global ALS Community | ALS Therapy Development Institute
http://mobile.als.net/Media/NewsItem.aspx?id=5482
This post from ALS Therapy Development Institute catalogs movies beyond The Theory Of Everything that involve ALS. Several of them I have yet to see.
ALS at the Oscars
Best actor was Eddie Redmayne for his portrayal of physicist and person with ALS Stephen Hawking in The Theory of Everything. I saw the movie twice and cried a river both times. First was at an ALSA screening in DC. Second was with family in Santa Fe. The movie focused on how life and love relationships and work go on despite this crushing disease.
Julianne Moore won Best actress for Still Alice. The character suffers from Alzheimer’s. Co-director Richard Glatzer has ALS and watched the ceremony from a hospital room, with respiratory complications. http://wp.me/p3lGN4-7v
Roof Rats
Roof Rats
Michael Gollin
September 2014
This is the repainted work shop roof, done by painters in September. Hopefully the power wash, rust bond coat and finish coat will stop the leaks and last at least as long as my paint job about 20 years ago.
That was when, as new home owners and new parents, I bought shed roof metal paint, put the ladder up and went to work. 3 year old Natasha wanted to come up so Jill hoisted her up the ladder, only about 6 feet high on the low side of the roof. We hung out for a while.
Natasha asked me if anything lived up there. Maybe we were watching squirrels. We were goofing around like we used to. I said only roof rats live on roofs. Natasha asked me what they looked like and so of course I made the hand animal with middle finger neck and the other 4 fingers as legs. She asked if they were good or bad, and I said there were good roof rats and bad roof rats. Natasha was really into conversations with fantasy critters so she wanted them to talk.
Thus began the tradition of having the right hand good roof rat tell you the good thing to do and the left hand bad roof rat tell you the bad thing to do. They would often perch on her shoulder and use funny voices to give their opposite advice.
The good roof rat says you need to brush your teeth to keep them clean and keep away germs. The bad roof rat says get them dirty and let your teeth rot, you will look more interesting with missing teeth.
The good roof rat says it’s time to go to sleep and have sweet dreams and wake up rested tomorrow. The bad roof rat says stay up late, get tired and cranky, throw a tantrum for your parents, and be ready for a grumpy day tomorrow.
It became a very fun creative and surprisingly effective way to work through many of the decisions of childhood. More imaginative than angels and devils, or “because I said so!”. And the two of them could fight. As in real life, usually the good roof rat won, but not always.
Max saw the roof rats some, and Julia too. But over time the roof rats receded to their usual lair, on roofs instead of on shoulders.
I think our kids do know good and bad, right and wrong, and how easy it is to argue about them. The roof rats served their purpose, I guess. Anyway, they are still up there on the newly repainted shed roof if any one needs to hear from them.
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