My friend Corey Reich has been living with ALS for nine years. Corey’s symptoms started when he was away at college, and he recently turned 30, a milestone he said he wasn’t expecting to meet.
I was introduced to Corey through our doctor, who told me that this was a family I should get to know. He was absolutely right. The funny thing is, neither Corey nor I ever go to an ALS clinic anymore (a topic for a future blog), but our families still get together every few months. Corey is an Oakland A’s fan, a tennis coach, and a lover of good food. He and his family are awesome, and they should get to be together for a long time.
After Corey was diagnosed, he started a group called Corey’s Crusaders to raise money for research. Many of us with ALS do that, either by aligning with a specific organization, as Corey’s family has done with ALS TDI, or by starting their own nonprofit like my friend Kevin Swan of A Life Story or my friend Jay Smith of Every 90 Minutes (who also appears in this recently released Father’s Day commercial for Dove! Jay, you stud.)
Corey’s Crusaders, a group that includes his dad Ted, mom Wendy, and sister Clare, among many others, does several fundraisers a year. Clare got a job with TDI out of college, and Ted is a board member. They are utterly committed to ending the disease, and they have been a great source of support to me and Rob – – and definitely to Scarlett, who adores them and particularly enjoys swimming in their pool and eating their Warriors cookies.
On June 25, the Reich family is hosting the San Francisco Corn Toss Challenge and Beer Fest in the Great Meadow at Fort Mason. Rob and I will be there, along with my sister and her husband Rob and their amazing trailer-turned-soundstage Bandwagon. Four local breweries will be serving up their goods: Russian River, Faction, Linden Street and new brewery Barrel Brothers.
Why am I telling you all of this? Well, partly to make those of you who can’t come jealous, but mostly so that those of you who are in the Bay Area can come out to Fort Mason, drink, play games, listen to live music, and raise money for a great cause. You can register here.
As it’s a beer festival, the event is 21 and over, so ditch the kids and come have some fun! Please pretend that I said this in my best carnival barker voice.
Two years ago, Rob and our friend Luke almost won the whole corn toss, which, for those who are unfamiliar with it, involves throwing beanbags into a hole, but, I mean, there’s totally an art to it. I’m sad now, because I just tried to find a video of monkeys throwing beanbags and I couldn’t find one. How does that sort of thing not exist?
As most of you know, I’m launching #WhatWouldYouGive later this month, but this event is also very important to me. The Young Faces of ALS, which is a part of ALS TDI, puts on these corn toss challenges across the country during the summer. It’s a really fun way to get together and fight the disease, and I hope to see some of you out there at Fort Mason on June 25 at noon!
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Sarah,
Have you seen this video by Dr. Bedlack at Duke University. https://www.youtube.com/watch?v=CaD-oF9deNY I researched the supplements of Lunasin that he discusses in the video. I also called his clinic to get the specific doses they are using in their study. My husband Matt has had ALS for 16 years. He started the supplements 6 weeks ago. I don’t know if we will have any of the successes that others have had but we have hope. We think we see minor changes, but don’t know if it’s wishful thinking yet or not. Here’s my husbands Facebook page. https://www.facebook.com/MattWhiteCureALS/ If you have any questions, feel free to email me.
I have! So interesting. I have friends who say it did nothing, but have also heard otherwise. Will be curious about your experience, and wishing you much luck. Hugs to you both.
Sarah,
I found your web site a couple of weeks ago. Thank you for putting it together. Like you, I also has ALS and have had it for 2 years. I love reading your blogs. I know it is not easy to write but keep on doing it as it helps me to know that others are going through to same thing I am. I can not wait for your take on not going to the ALS clinic. I have been telling my family members that do not what to go to the clinic anymore because there is nothing new that they tell me that I do not already know. Keep the blogs coming and good luck with the corn toss and beer fest.
Thanks, Jeff!