Saturday, June 19, 2004
Ray Charles died last week. He (among others) sings "Over the Rainbow" from the Wizard of Oz. I always cry when I listened to that song. Once we were driving outside of Cleveland - I think we were on our way to Minnesota for transplant - and I was listening to a CD I made with that song on it and crying and crying. Mom and you guys were probably all asleep or something. I played a different version of that song for you in your room in the PICU. Israel "Iz" Kamakawiwo'ole is the guy who sang that one. I don't know if you heard it or heard anything. I hope you did.
They did a story on TV about how loud hospitals are and how it is hard to get better because of all of the noise. You can watch it.
We never got any sleep with all of the beeps and alarms going off all night. That was no fair. The story talks about that and also says that nice music helps you get better. We tried.
One thing that I want to do with the Hope for Henry Foundation is give XM radios to all the kids going through transplant. I think that XM Kids will be a lot of fun for any kid sitting in the hospital. Aside from fun songs like Poop Goes the Weasel, XM has bingo, just like the hospital bingo you used to play on Thursdays in Minnesota.
I went to Chicago this Saturday for the day last weekend. It was a meeting of Fanconi anemia families that raise money for research. Mom and I definitely think it is important to continue to help and make sure that it is easier on all families that come after us. I hear from Dr. Auerbach that Memorial Sloan Kettering Hospital in New York is having a lot of success with tough Fanconi anemia transplants.
I hadn’t really thought about the meeting much before I got there. When I walked in I was surprised to see Molly’s parents. I like hanging out with Molly’s dad, Jack. He is a super guy and I wish I talk to him more.
When we all went around the room to introduce ourselves, everyone said who they were, who they were married to and who were their children. When we got to me, I said I was Allen Goldberg, and I am married to Laurie Stronging, but I just couldn't say your name. It wouldn't come out. Tears were all ready to come out but not your name. I just couldn't do it. I pointed to the man next to me hoping he would just continue by introducing his family and he did. I am sorry. The thing I wanted people to know the most was that I am the father of Henry Strongin Goldberg, Jack Strongin Goldberg and Joe Strongin Goldberg.
They gave everyone who was there a handbook with ideas how to raise money. I looked through it and saw all of these things that we used to do.
One time Dr. D'Andrea came and spoke at Aunt Abby and Uncle Andy's house. Also, we did one of the first celebrity charity auction on Yahoo. And there was one fundraiser where everyone had dinners at their homes, invited friends, watched a video about you and then joined up later at Temple Sinai. That was a good one. You had a great time.
February 11, 1999, Thursday, Final Edition
A Washington technology executive is using everything he's learned about computers and networks in a personal project that couldn't be more important: saving his son's life.
Allen Goldberg of VarsityBooks.com launched an online charity auction yesterday to raise money that will go toward researching Fanconi anemia, a rare disease that his 3-year-old son, Henry, has had since birth.
Hosted on Yahoo and running through Feb. 24, the auction is a philanthropic version of the now ubiquitous commercial online auctions. Yahoo entered the auctioneering business in September and has so far held 20 online charity events. It holds the auctions for free for those with a nonprofit status, says Karen Opp, Yahoo Auctions Producer.
Those who log on to Yahoo.com and click on its auctions section can bid on 100 or so items that Goldberg now has in his basement, including a jacket formerly owned by singer Mary Chapin Carpenter and a tennis racket signed by Gabriela Sabatini.
Goldberg hopes the auction will raise $ 7,000 to $ 10,000, all of it to go to the Fanconi Anemia Research Fund in Eugene, Ore. "It lets us reach as many people as possible," says Goldberg.
When Henry was born and diagnosed with the disease, Goldberg, then Webmaster at the National Association of Broadcasters, used the Internet to research what is still a little-known condition. Only 1,000 or so people, mostly children, have the disease. Soon after Henry's birth, Goldberg and his wife, Laurie Strongin, created a Web page, www.hsg.org, to keep friends and family updated on his health and encourage donations to the Oregon group. About $ 150,000 has so far been raised through the site.
Children with Fanconi anemia are usually born with myriad birth defects. The genetic condition can cause bone-marrow failure; the life expectancy for a child with Henry's type of the disease is four years.
"The clock is ticking," says Goldberg.