The Westin Copley Place in Boston was the location for this year’s ALS TDI White Coat Affair, a dinner and fundraiser that followed the organization’s 10th Annual Leadership Summit last week. Rob and I skipped the week of summit meetings, but showed up unfashionably on time for the party on Saturday night.
Corey Reich was sitting towards the entrance when the event began, looking his usual dapper self in a striped tie. I don’t like to hog Corey at these things, because I’m lucky enough to get to see him and his amazing family with some regularity back home.
I was introduced to Ellen Corindia, who’s had ALS for thirteen years and who uses a computer screen to communicate. Despite being in a wheelchair, Ellen went skiing with her partner last winter. They showed me the video, him skiing behind her, guiding her chair as the two of them zoomed down the mountain.
Among the people I was looking forward to meeting were Stephen and Cara Finger, who laughed as they explained that they referred to us all as “Stephen’s Internet Friends.” A perfect description, though if you didn’t know him, it might make you think that Stephen spends an unhealthy amount of time in a dank basement pounding Red Bull and trolling the web. In fact, Stephen—a university professor—worked quickly once he found out he had ALS. He reached out to other people with the disease, started doing research, and became outspoken via a Huffington Post blog. I don’t know if he likes Red Bull.
Jay and Missy Smith were there from Austin, Texas, and were exactly as awesome as I knew they would be, because sometimes you can just tell these things. Jay hasn’t let ALS slow him down at all—he started the nonprofit organization Every 90 Minutes in a matter of weeks after his diagnosis, and he wakeboards and does martial arts regularly.
Beth Hebron, beautifully blue-haired and blue-eyed, was there with her family. We talked about our love of skinny jeans—Beth still has a method for putting them on, though I’ve said my goodbyes to those cuter days. We also talked about our love of little sisters.
At dinner, I sat next to Nana Premadi, an astrophysicist from Indonesia, who wore braces on her wrists. She decided very recently to travel to the U.S. for the TDI event, with the goal of meeting other people with ALS and returning to her country with some ideas about how to better support patients there.
Deb McQueen Quinn was passing out tote bags that she makes. “It’s getting harder to do them,” she said, looking down at her hands. “So I have a group of girls who help me.” She handed two to Pat Quinn (no relation) that were adorned with his logo, Quinn for the Win.
Anthony Carbajal, the resident ALS rockstar and charming advocate for the cause, got a little choked up during his speech. “I gave a speech yesterday, too,” he told us, “but I think I pretty much just cried the whole time. So I’m doing better today.”
After dinner, I sought out Pat and Jenn Quinn, another incredible couple. When I asked Pat how he was doing, he told me his legs are a little shaky when he walks. “I wish I could still walk,” I said wistfully. “Yeah, well I wish I could hold my own drink,” he smiled, gesturing to my wine glass. Touché, my friend. It’s a funny thing about ALS, how we are all experiencing it together, but so differently, especially in the earlier stages. Jenn reached over and held Pat’s drink out to him.
Everyone in the room wished that ALS was not a real thing, but the vibe was celebratory and fun, as a party should be. People were swiping credit cards, donating money to further TDI’s goal of quickly developing drugs that can slow the progression of this disease. Throughout the space, people mingled, chatting and clinking glasses. The band played Pharrell’s Happy.
Jay Smith sat at his table, and looked around. “Having ALS isn’t that bad,” he said. “It’s really not that bad.”
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Sarah:
My heart goes out to you. I lost my Father at an early age to ALS and now, one of my older brothers is dying from it. It’s crazy. I see that you used to be a runner. I am a runner and my brother used to hike and bike in Seattle. Watching him deteriorate is not fun and yet, I’ve drawn strength from all these inspiring stories. You’re an inspiration to many. Keep doing what you do, because it’s fun to read and hear about what you’re doing.
- MIchael Huens
Los Angeles, CA
Hey Sarah – I was there and missed the honor of meeting you! Darn it! Due to the record attendance I only saw you a couple of times from afar. I love your blog and your writing style. I lost my mom and two other relatives (grandmother’s siblings) to ALS. We are all in it to win it together. Thank you for all you are doing to raise awareness!
Sooooo great meeting you and your husband on Saturday! It was a wonderful evening surrounded by even more than wonderful people. xo
Hi Sarah,
I’ve heard lots about you & your family over the years through my sister in law, Amy Farrow. And I’ve been keeping up with your blog for the past few months. Amy declared you amazing long ago & she was right. You are an inspiration in so many ways & such a great writer. Thanks for that. I’m guessing you already know that you rule, but I think it’s important for people to hear it.
Kim Grobengieser
I’m so glad you have this tribe, and that you got to spend time with them face-to-face.
Thank you, Michael. I really appreciate your words of support, and I’m so sorry that ALS has affected your family. Hugs.
Lisa, I’m bummed I missed you!
You too, Jenny. Thanks!
Thank you, Kim! xo
xoxo
Hi Sarah,
It was such a pleasure to meet you. Our daughter, Kim tells me how special you and Rob are and she was absolutely correct. I am glad you were able to connect with our son, Jason who has ALS and his wife Missy. We continue to be inspired by their attitude and determination to forge ahead with this disease. Gene and I spent a lot of time with the wonderful people from ALS/TDI and so touched by the research doctors determination to end this disease. We know many of them could make far more in the private sector, but their love for science and their patients makes them even more determined. We felt that we have made a new family of friends, you, Rob, Cara, Nana, Stephen, Ellen, Leif, Pat,Pat’s dad, Jenn, Cory and his wonderful parents, Deb Quinn, Anthony, Pete, Beth, and countless others who are part of our journey. I did not expect to take on all of these other children, but do it with pleasure. You have a new family with the Smiths and believe me there are a lot of us. We love all of you for your courage and determination to put an end to this disease.
Gene and Barb Smith (parents of Jason Smith)
Gene and Barb, you two are just amazing. Thank you for this, for all of your support, and for your generosity in every way on Saturday. Big hugs to you!
It was great to finally meet you. This weekend did much to boost Beth’s and our spirits. What a group of incredible people putting up an unbelievable battle. if we all believe, we can do great things. Let’s end this disease once and for all in 2015. Its times like these and people like you who make me regain hope and get to work on our goal.
Great to meet you and your family, Bob! I’m 100% with you on this.
Diagnosed in April 2013. So happy I found your blog. Happy, inspirational people keep me going.