Monthly Archives: May 2015

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.

We are not alone

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.

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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.

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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.