In this thread, Marley23 has shared the sad news of his brother’s recurring serious illness.
“It is better to light a single candle than to curse the darkness”, and the SDMB is a community justly renowned for its generosity in a good cause. I think we would wait a good long while before we find a darkness deeper than to lose a young man like Marley23’s brother, or a cause better than the effort to prevent it.
The foundation in question is The Chordoma Foundation. There is a link to donate at the top of the page.
I ask those Dopers so moved to express your good wishes to Marley23 and his brother and family, and to give what you are led to so that others don’t have to got thru this.
This thread has been pre-approved by twickster and Marley23, of course.
Thanks very very much, Shodan. I was thinking about doing something like this but I’m happy to let someone else take point. The Chordoma Foundation is terrific and I doubt most rare diseases have the kind of talent it’s attracted. The work they are doing through the University of Florida is particularly smart: they’re testing basically every approved cancer drug against cultures of chordoma cells. There are no approved drugs for chordoma. Basically if chemotherapy is called for, doctors will choose from drugs approved to treat other cancers. None have really been proved to work for a significant number of people. That research could help change that. Since it’s so hard to get resources for such a rare disease, they’ve also done a great job of connecting scientists who are working on related projects and they’re doing everything they can to collect more tumor samples.
I’ve met Josh Sommer, who co-started the foundation with his mother. He’s an inspiring guy almost to the point of absurdity. I think he’s 23 now. This is an extremely difficult cancer and everybody who I have met in this community feels very lucky that we have a group of very talented and bright people leading the charge.
To be honest they’re pretty damned slow about it. I think I’ll get a notification after each donation is processed but that progress bar is not updated in a big hurry.
There’s also an option to donate anonymously (on the main page) so don’t be too disappointed if somethings don’t show up. People might choose that route too.
They do accept credit cards, according to the Donations page. I don’t think there are any restrictions on which ones they will accept.
And of course if people want to donate anonymously that’s fine and I don’t intend to pry. But if anyone wants to contribute in a trackable way then we have that option through my page.
I do want to emphasize that if you donate through my page, I won’t be notified about any details unless you select that option while you are entering the donation. But your gift will eventually get tallied in the progress bar.
That’s supposed to be the whole point of the progress bar. It’s annoying that it doesn’t get updated faster. But volunteers, limited resources, etc. Thanks to those who have already donated! I hope we can make some good come out of all this.
Hey, Marley–are you sure your Chordoma Champions page is working right? It seems to me that if someone donates through your page, the total should be updated automatically–why should a volunteer have to manually update the slider, when everything is done online? I am very surprised the slider still isn’t moving–something seems amiss. Is there someone you can contact to check up on this?
I’ll ask if I can find the time, but this is how it is with all the champions pages - I’ve given through other ones and had the same result. I don’t know why it happens.
The guy who created the software for the champions pages just got back to me. He says he’s working on rewriting the software and there have been problems because there were three different systems involved in processing donations. He said there will be huge improvements once he’s done but he’s not sure when he’ll finish. The donations are being processed, though.
I got this in an email tonight. It’s an ad featuring Lauren Richmond, a girl my brother met at the first Chordoma Community Conference. She was a bit younger than he is. In the ad the Richmonds talk about her illness, research, and the foundation itself. You can also briefly see photos of Justin Straus, who my brother also met at the first conference. It was made by AT&T for the foundation and the United Way.
Just wanted to bump this for those of you who, like Shodan and myself, want to do a little something to show we care.
Since it’s a small, struggling charity for a disease that lacks the glamour and the numbers of others, the web site is funky, and doesn’t show how much we’ve raised, but we’ll find out eventually, and in the meantime … well, it’s something we can do.
While I can’t tell exactly what donations were made through which page, I think Dopers and others have given about $1,500 in Tyler’s name. Thank you very much!
