Saturday, July 25, 2015
What would you do for a dying friend? Bruce Edwards was caddy for golfing great Tom Watson for 30 years. They were best friends. In 2003, Edwards was diagnosed with ALS. That same year Watson, with Edwards by his side, had a dream round at the U.S. Open. Watson shot 5 under par to grab a share of the first round lead. He used that moment to bring attention to Edward's battle with ALS. That was the last tournament Bruce Edwards caddied. He died 5 months later, at age 49. Watson has kept Bruce's memory alive by raising millions for ALS and doing the ice bucket challenge last year.
The 18th hole at the First Annual Hope-JG Golf Scramble will be dedicated to Bruce Edwards. Each of the 18 holes that day will be dedicated to a family with ALS. Join us in August 18th at beautiful Va Halla golf course in Cumberland. To register to play or to sponsor the event, go to: hope-jg.org.
If you can't make it or if you don't golf, please feel free to donate online at: http://www.hope-jg.org/#!donate/c1ghi or by sending a check to: PO Box 1805, Windham, ME 04062. Donations of $25 or more made between now and 8/18 will get a Hope-JG tee shirt (please specify size and gray, red or black color preference). We have several individuals who have generously sponsored the event as well. Sponsorship info at hope-jg.org.
Finally, if you're looking for a place to donate your ice bucket money this year, please consider donating to our foundation. You will help us get closer to building a world class ALS/MS Residence and promoting innovative technologies which enhance the lives of the disabled around the world.
Friday, July 10, 2015
I don't know Chris Rosati. Well, I sort of know him, as well as you can "know" a Facebook friend you've never met. As well as you can know someone from the multiple "On The Road" segments of the CBS Evening News of which Chris has been the subject. As well as you can someone who has become a brother in arms by virtue of an ALS diagnosis.. Maybe I know him better than I think.
I reached out to Chris, as I suspect many did, with a Friend request on Facebook after the first "On The Road" story called "Grand Theft: Donut"(http://youtu.be/eMNVJZRIU9s). He graciously accepted and we've Liked some of each other's posts over the past year or so and exchanged a few messages.
Chris was one of the first people on the wish list of honorees for our foundation's first annual golf scramble coming up this August.
(http://www.hope-jg.org/#!golf-scramble-splash/cd1r). We will be dedicating each of the 18 holes to a person fighting, or lost to ALS and their families. We are honored to have Chris among the 18.
Chris is a man always on a mission. He's gone from being the "Krispy Kreme Guy" to a project called "The Butterfly Effect" (http://youtu.be/90PUAMv7-DM).
Now, Chris has raised the bar for himself and for families with ALS across the country. More importantly, he's raising the bar for arguably the preeminent brand for ALS - the national ALS Association (ALSA). The same ALSA that collected around $120M from last year's Ice Bucket Challenge (IBC). Chris has publicly challenged the ALSA to issue a statement that they will cure ALS by the year 2021. To read the full text of his statement go to
The Hope-JG Foundation has officially partnered with Chris and the "by2021" initiative. We are proud to do so.
The IBC was a global phenomenon which brought ALS into virtually every home, back yard, locker room and office building in the developed world. With the leadership of Pat Quinn and Pete Frates, the IBC will happen again this year and the new motto is "Every August until there's a cure". Awareness of ALS has been raised. It's now time to focus on a cure. No need for brochures, balloons and banners. It's time to truly support the researchers and labs doing the heavy lifting.
Chris has a plan. Like I said, he's a man on a mission. I'll let him roll his plan out when he's ready. Based on an email from him today, he's logging some heavy miles on his wheelchair and burning up his speech generating device.
For now, join us on what will be Chris' greatest mission to date. Visit http://by2021.org and start using #by2021 and #believe in your Tweets.
It's time for a cure. And 6 years is more than enough time...if we get serious.