Jim Plews-Ogan

Words can't express our gratitude! What a fabulous event -- we exceeded our fundraising goal, launched The Hummingbird Ale, celebrated in person with so many friends, and all of these efforts will benefit ALS research... Wow. Thank you.

.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight ALS, a 100% fatal disease. They don’t have time to wait. Reverse your decision now. @USRepKCastor

If you only read bits and pieces of this, I recommend investing an hour and reading it thoroughly. It covers multiple sides of issues at an important time in ALS history. When Dying Patients Want Unproven Drugs newyorker.com/magazine/2023/…

Thanks to our generous friends The Sunseris for coming in as a Pale Ale Sponsor for our 8/5 event with Starr Hill! We can't wait to launch the Hummingbird Ale with Ales for ALS. See you there?? Register: loom.ly/6v40U9s #ales #alesforals #als #support #donate

ALS is hard and talking about it is incredibly difficult at times. Listen in to my chat with 3 others who have ALS, Amy Stiens, Jim Plews-Ogan and Matt Klingenberg about these tough conversations. Available wherever you listen or bit.ly/ListenOnApplePodcast @iamalsorg @ALSOhioCnS

About 5,000 people are diagnosed with ALS in the U.S. each year. The disease affects the nerve cells in the brain and spinal cord, causing patients to lose their ability to move and speak. A.I. is now helping patients preserve their voices. @DrLaPook explains how.

Save the Date! On Saturday, August 5, Starr Hill Brewery is releasing a special, limited-edition Hummingbird Ale and we're having a party to celebrate! Register to attend or donate to support ALS research here: mhttps://loom.ly/6v40U9s #als #research #donate

On April 26 my friend Jaime started his quest from Geneva Switzerland to Santiago de Compostela. On the 75 day he arrived, covering 1900 km (1200 miles) across France and Spain, and 3 ALS t-shirts. He dedicated his walk to his dad and to me.

💔 Tonight, my son asked my wife if he could lay on top of me if #ALS takes me away, so he could go to heaven with me. The innocence and love in his question shattered my heart. Let's work together to #EndALS and ensure a future where no child has to ask these questions. ❤️🙏

Thank you @NPR for letting me speak my caregiver truth - that when I didn't have external caregiving support it was "imprisonment" and "hellish" and when we finally got external help, it racked up to $300k plus/yr, no coverage. #CaregiversCryForHelp npr.org/2023/06/27/118465585…

I held Scott’s hand as he took his last breath. Felt his pulse weaken and hand turn cold. I consider it the highest honor to have been by his side while he passed. But also a curse. The trauma from it will never leave me. But I would do it all over again for him. ❤️ #EndALS

Fuuuuuuu#@! @epjule I'm shattered. That's 2 today. We need to #ENDALS

In May and June, I had the privilege of being followed and interviewed by the amazing team at @NPR's All Things Considered. Today, they posted part 1 of the story by Juana Summers. It is an amazing piece that moved me to tears. npr.org/programs/all-things-…

The world is a bit less fun and vibrant without Julie Suarez @epjule in it.

It doesn't matter how effective Relyvrio might be for me if I can't afford to take it. Ironic how hard many of us pushed to have a drug approved just to have it be out of reach.