4 ms·

Chordoma Cancer Sucks (Feedback Please)

53 points by chasingsparks 17y ago

chasingsparks 17y ago
I think some people might view this as borderline spam. It might be. If I get down-voted flagged, so be it. However, I want some feedback regarding ways to make it more viral. (I also want votes and shares -- i.e. it may be spam.) The web stuff is not my thing. I just learned what a retweet was yesterday.
- fiaz 17y ago
  It's not spam, it's a cause, just don't know if it belongs here on HN. Regardless, I'm wishing you the best.
  - mechanical_fish 17y ago
    I can't tell if it's exactly HN material either, but the fact that he's hacking on the design of the page in real time does improve the argument that it is. My 5 cents: You need more calls to action. Make more DONATE links, especially near the end -- you don't want to make the reader scroll backwards to find one. This will seem cheesy. That's okay. You're doing a sales pitch. Everyone knows that within the first three seconds. The hard-boiled prose style will help balance the presence of all the DONATE links. You can even try to work them in in humorous ways. For example, I think it wouldn't be too silly if the last word on the page -- "donate", at the end of the final joke -- were linked to an action page. I agree with the person who suggests asking for a specific dollar amount. ("$100, but if not, whatever you can afford") I base my argument on the fact that every phone solicitor does this, so someone must have determined it was effective. But I could be wrong. Perhaps this is the perfect time for some A/B testing. Think of NPR, and how during their pledge drives they recite the phone number every fifteen seconds. [1] You get the impression that the people giving the spiels are staring at a clock that blinks every fifteen seconds with an alert: "SAY THE NUMBER NOW." Sometimes they barely manage to finish their sentence before injecting the number. Good luck! --- [1] Note that, however annoying your page may be to some people, it is an order of magnitude less annoying than an NPR pledge drive. ;)
    - chasingsparks 17y ago
      I have done a/b testing with X dollars for a different fund-raising project before. It does help boost money. I think this raises a more important point though -- my page was written yesterday specifically to address the JP Chase contest. Obviously, I am not emphasizing that enough. I agree with the more links thing. I'm gonna add that in now (that is once I finish what i have to do for my actual 9-5 job). [Edit: added more action links to each section] Thanks for the feedback.
      - ErrantX 17y ago
        my page was written yesterday specifically to address the JP Chase contest. Obviously, I am not emphasizing that enough. Your right It's only now you've said that I properly noticed that.
- ratsbane 17y ago
  I liked it. It's clear, simple, and honest. My tastes, however, may not be representative of a large part of the general population. I followed your link to the Chordoma Foundation and donated $25. It's not much, but I hope it helps. Good luck.
  - chasingsparks 17y ago
    $25 from a person I don't know is a lot IMO. I was not expecting any donations. Thanks man.
edu 17y ago
The copy is too aggressive, I understand your position but as I was reading more of the page the more disconnected I was. IMO, you should rewrite it to make it more persuasive.
- pmichaud 17y ago
  I didn't think it was too aggressive. Maybe you're just not comfortable with frank, direct writing?
  - edu 17y ago
    You Are Indifferent So, you don't really care about people who die from Chordoma? Fine. There's room for you too. If Chordoma is cured, you wont have to be nagged by me anymore. Pimp. This sounds quite aggressive to me. Probably if somebody is in deferent and reads this won't be convinced.
    - chasingsparks 17y ago
      Agreed. Deleted that part. Thanks.
- chasingsparks 17y ago
  My friend seem equally split on this issue. I prefer direct writing, but even some of them -- people who liked me -- said they were turned off. On the other hand, a lot of them said things like, "I wish most solicitations were like this. Just tell me what you want and if i can I will." I.E. I am not sure if i should or should not change it.
  - pmichaud 17y ago
    I think it's more effective to ask for a specific dollar amount. If you notice, radio pledge drives and the like mention a "suggested donation amount" constantly. That way you short circuit all kinds of over thinking people do. Ask for $100 then tell people if they can't afford it, to give less, and that every bit helps.
megamark16 17y ago
I found it effective. I logged into Facebook immediately and voted, so at least in my case you had the intended impact. I had never even heard of chordoma before today, so good on ya!
- chasingsparks 17y ago
  Thanks! And yea, it's really rare. You should not have heard of it. I was in the ER recently for a allergic reaction to an unknown substance. The ER doc doing a history said, "um...a...what?"
megamark16 17y ago
Here's a little graph: http://www.google.com/trends?q=Colon+Cancer,Breast+Cancer,Prostate+Cancer,Lung+Cancer,chordoma&ctab=0&geo=all&date=all&sort=0 http://www.google.com/trends?q=Colon+Cancer,Breast+Cancer,Pr... Note the thin purple line on the graph, that's chordoma, in case you missed it. While this isn't scientific, it certainly paints a picture.
- jeremyawon 17y ago
  why does the trend for "breast cancer" spike around q3?
  - chaosmachine 17y ago
    breast cancer awareness month
  - deleted 17y ago
    [deleted]
byrneseyeview 17y ago
I'm not sure how "he has a rare disease" became a reason to do more to solve it; it should be more like "it was a freak accident," in the sense that the rarer the disease, the less it makes sense to fix it. And you could easily recast your marginal benefit theory to go in the opposite direction: how many people devote all their time to thinking about curing Leukemia, compared to the number who are similarly obsessed with curing Chordoma? Large groups of smart, committed, well-funded people have economies of scale. Chordoma clearly sucks, but this plea is just empty.
- chasingsparks 17y ago
  You should not have been down-voted for this comment. My argument against that is you don't even need smart people to be obsessed with Chordoma. Simple things that are routinely done for other diseases that are done by technicians could yield major benefits. E.G. matched normal tissue sequencing, having a tissue bank (people how want to research Chordoma have a hell of a time getting some), etc. This is mostly an issue of money. It would be like if somehow streph infections never appeared until last year but penicillin was still found long ago. A average mind might be able to deduce that anti-biotics are a good call. Actually, i should probably add this to my argument on the page.
wmeredith 17y ago
I like it. Add some more line spacing at least on that first paragraph where you've got highlights. The background color is cutting of the descender on your lower-case "g" in the first line.
- chasingsparks 17y ago
  Thanks. I changed it but it's actually just the underline obscuring it. However, I actually like the way the first paragraph looks when I add spacing.
csmeder 17y ago
The layout is very readable! however, I have one suggestion: Left align your photo. Follow the advice of this book by Robin Williams: "Find a strong alignment and stick to it." "Avoid using more than one text alignment on the page (that is, don't center some text and right-align other text). And please try very hard to break away from a centered alignment unless you are consciously trying to create a more formal, sedate presentation. Choose a centered alignment consciously, not by default." - The Non-Designer's Design Book: Design and Typographic Principles for the Visual Novice. http://books.google.com/books?id=n1AuwXafMO8C&lpg=PT42&ots=5YGli_lc-M&dq=non%20designers%20design%20align%20left&pg=PT50#v=onepage&q=&f=false http://books.google.com/books?id=n1AuwXafMO8C&lpg=PT42&#... Take a look at the chapter above she shows some good examples of how to integrate images into a layout.
- chasingsparks 17y ago
  I tested out your suggestion. It seems to integrate better your way. Changed. Also thanks for the book recommendation. I'm going to add it to my (mile long) wish list. I am not a designer...
  - csmeder 17y ago
    Nice, I'm glad you found it useful. I would actually recommend her previous edition of the book. In this new version she trys to update it using color and it goes all wrong. She is stretching her ability past her strong points. She is EXTREMELY good at the basics, but ask her to design something in color and its just bad IMHO. This is the edition I like : http://www.amazon.com/Non-Designers-Design-Book-Typographic-Principles/dp/1566091594 http://www.amazon.com/Non-Designers-Design-Book-Typographic-...
h34t 17y ago
This summer I met another guy who had chordoma, Josh Sommer. He's done a lot of amazing work helping to spark more research into the disease. Your page was the last kick in the pants I needed to look up a fundraising email he'd sent me awhile back and make a small contribution. Thank you. When Josh first told me about chordoma, the question I asked myself was, "How can any disinterested party rationally decide to support a rare disease, when other diseases affect more people?". Your chart/discussion about the possibility of there being a higher ROI for rare disease research than for 'well established' disease research finally got me over this hurdle. Even though it has no numbers behind it, so I am not left "fully convinced" of anything, it at least created the possibility-space in my psyche that perhaps there is more reason to go after rare diseases than I'd realized. In reality the emotional reason I have to give (having met Josh) is still a big reason why I care, but the attempt at a rational argument was the little nudge that pushed me over the edge: What if there are many such rare diseases that could benefit immensely from just a small fraction of the research that the big ones get? ...And what if studying these edge cases will also result in unexpected discoveries that have other implications? "The more astute reader might immediately challenge this graph" line helps too. It makes me feel confident that you aren't trying to skew things one way without fully acknowledging the limits of your knowledge and the bias you hold. Small comments: * the "cash is king" line put me off a bit, and I think it could be erased without losing any oomph. In the big picture, it's not just about cash, it's also about getting scientists interested, helping coordinate the research, all sorts of things. (Though it's true that cash may be the only way for a normal person to contribute)
- chasingsparks 17y ago
  Deleted the Cash is king comment. You're the second person to say that. There is also an edge case potential. That is another point i will add to the page in a bit. Re: Josh. We're not strangers ;) http://pathdependent.com/2009/11/04/preface_to_fundify/ http://pathdependent.com/2009/11/04/preface_to_fundify/ P.S. Thanks for the contribution!
  - h34t 17y ago
    You are most welcome. It is difficult (though not impossible, my life hasn't been without blemish) to imagine what it must be like to have a prognosis like yours. I admire everything you are doing to combat it.
anonjon 17y ago
It needs an index on one side to the pertinent parts of the website, and an index on the other side with links to the different foundations/places to donate. My initial reaction was disorientation because of the lack of navigation and the huge font. Also you might want to try try offsetting the main text from the white background using a slightly darker (greyish) color. You can do all of this relatively easily using css. Giving the header an (offsetting) background color might help as well. You also might want to use a smaller font for your body text (and add in more text even if you don't expect people to read it all).

53 points by chasingsparks 17y ago

I think some people might view this as borderline spam. It might be. If I get down-voted flagged, so be it. However, I want some feedback regarding ways to make it more viral. (I also want votes and shares -- i.e. it may be spam.) The web stuff is not my thing. I just learned what a retweet was yesterday.

fiaz 17y ago
It's not spam, it's a cause, just don't know if it belongs here on HN. Regardless, I'm wishing you the best.
- mechanical_fish 17y ago
  I can't tell if it's exactly HN material either, but the fact that he's hacking on the design of the page in real time does improve the argument that it is. My 5 cents: You need more calls to action. Make more DONATE links, especially near the end -- you don't want to make the reader scroll backwards to find one. This will seem cheesy. That's okay. You're doing a sales pitch. Everyone knows that within the first three seconds. The hard-boiled prose style will help balance the presence of all the DONATE links. You can even try to work them in in humorous ways. For example, I think it wouldn't be too silly if the last word on the page -- "donate", at the end of the final joke -- were linked to an action page. I agree with the person who suggests asking for a specific dollar amount. ("$100, but if not, whatever you can afford") I base my argument on the fact that every phone solicitor does this, so someone must have determined it was effective. But I could be wrong. Perhaps this is the perfect time for some A/B testing. Think of NPR, and how during their pledge drives they recite the phone number every fifteen seconds. [1] You get the impression that the people giving the spiels are staring at a clock that blinks every fifteen seconds with an alert: "SAY THE NUMBER NOW." Sometimes they barely manage to finish their sentence before injecting the number. Good luck! --- [1] Note that, however annoying your page may be to some people, it is an order of magnitude less annoying than an NPR pledge drive. ;)
  - chasingsparks 17y ago
    I have done a/b testing with X dollars for a different fund-raising project before. It does help boost money. I think this raises a more important point though -- my page was written yesterday specifically to address the JP Chase contest. Obviously, I am not emphasizing that enough. I agree with the more links thing. I'm gonna add that in now (that is once I finish what i have to do for my actual 9-5 job). [Edit: added more action links to each section] Thanks for the feedback.
    - ErrantX 17y ago
      my page was written yesterday specifically to address the JP Chase contest. Obviously, I am not emphasizing that enough. Your right It's only now you've said that I properly noticed that.
ratsbane 17y ago
I liked it. It's clear, simple, and honest. My tastes, however, may not be representative of a large part of the general population. I followed your link to the Chordoma Foundation and donated $25. It's not much, but I hope it helps. Good luck.
- chasingsparks 17y ago
  $25 from a person I don't know is a lot IMO. I was not expecting any donations. Thanks man.

edu 17y ago

The copy is too aggressive, I understand your position but as I was reading more of the page the more disconnected I was. IMO, you should rewrite it to make it more persuasive.

pmichaud 17y ago
I didn't think it was too aggressive. Maybe you're just not comfortable with frank, direct writing?
- edu 17y ago
  You Are Indifferent So, you don't really care about people who die from Chordoma? Fine. There's room for you too. If Chordoma is cured, you wont have to be nagged by me anymore. Pimp. This sounds quite aggressive to me. Probably if somebody is in deferent and reads this won't be convinced.
  - chasingsparks 17y ago
    Agreed. Deleted that part. Thanks.
chasingsparks 17y ago
My friend seem equally split on this issue. I prefer direct writing, but even some of them -- people who liked me -- said they were turned off. On the other hand, a lot of them said things like, "I wish most solicitations were like this. Just tell me what you want and if i can I will." I.E. I am not sure if i should or should not change it.
- pmichaud 17y ago
  I think it's more effective to ask for a specific dollar amount. If you notice, radio pledge drives and the like mention a "suggested donation amount" constantly. That way you short circuit all kinds of over thinking people do. Ask for $100 then tell people if they can't afford it, to give less, and that every bit helps.

megamark16 17y ago

I found it effective. I logged into Facebook immediately and voted, so at least in my case you had the intended impact. I had never even heard of chordoma before today, so good on ya!

chasingsparks 17y ago
Thanks! And yea, it's really rare. You should not have heard of it. I was in the ER recently for a allergic reaction to an unknown substance. The ER doc doing a history said, "um...a...what?"

megamark16 17y ago

Here's a little graph: http://www.google.com/trends?q=Colon+Cancer,Breast+Cancer,Prostate+Cancer,Lung+Cancer,chordoma&ctab=0&geo=all&date=all&sort=0 http://www.google.com/trends?q=Colon+Cancer,Breast+Cancer,Pr... Note the thin purple line on the graph, that's chordoma, in case you missed it. While this isn't scientific, it certainly paints a picture.

jeremyawon 17y ago
why does the trend for "breast cancer" spike around q3?
- chaosmachine 17y ago
  breast cancer awareness month
- deleted 17y ago
  [deleted]

byrneseyeview 17y ago

I'm not sure how "he has a rare disease" became a reason to do more to solve it; it should be more like "it was a freak accident," in the sense that the rarer the disease, the less it makes sense to fix it. And you could easily recast your marginal benefit theory to go in the opposite direction: how many people devote all their time to thinking about curing Leukemia, compared to the number who are similarly obsessed with curing Chordoma? Large groups of smart, committed, well-funded people have economies of scale. Chordoma clearly sucks, but this plea is just empty.

chasingsparks 17y ago
You should not have been down-voted for this comment. My argument against that is you don't even need smart people to be obsessed with Chordoma. Simple things that are routinely done for other diseases that are done by technicians could yield major benefits. E.G. matched normal tissue sequencing, having a tissue bank (people how want to research Chordoma have a hell of a time getting some), etc. This is mostly an issue of money. It would be like if somehow streph infections never appeared until last year but penicillin was still found long ago. A average mind might be able to deduce that anti-biotics are a good call. Actually, i should probably add this to my argument on the page.

wmeredith 17y ago

I like it. Add some more line spacing at least on that first paragraph where you've got highlights. The background color is cutting of the descender on your lower-case "g" in the first line.

chasingsparks 17y ago
Thanks. I changed it but it's actually just the underline obscuring it. However, I actually like the way the first paragraph looks when I add spacing.

csmeder 17y ago

The layout is very readable! however, I have one suggestion: Left align your photo. Follow the advice of this book by Robin Williams: "Find a strong alignment and stick to it." "Avoid using more than one text alignment on the page (that is, don't center some text and right-align other text). And please try very hard to break away from a centered alignment unless you are consciously trying to create a more formal, sedate presentation. Choose a centered alignment consciously, not by default." - The Non-Designer's Design Book: Design and Typographic Principles for the Visual Novice. http://books.google.com/books?id=n1AuwXafMO8C&lpg=PT42&ots=5YGli_lc-M&dq=non%20designers%20design%20align%20left&pg=PT50#v=onepage&q=&f=false http://books.google.com/books?id=n1AuwXafMO8C&lpg=PT42&#... Take a look at the chapter above she shows some good examples of how to integrate images into a layout.

chasingsparks 17y ago
I tested out your suggestion. It seems to integrate better your way. Changed. Also thanks for the book recommendation. I'm going to add it to my (mile long) wish list. I am not a designer...
- csmeder 17y ago
  Nice, I'm glad you found it useful. I would actually recommend her previous edition of the book. In this new version she trys to update it using color and it goes all wrong. She is stretching her ability past her strong points. She is EXTREMELY good at the basics, but ask her to design something in color and its just bad IMHO. This is the edition I like : http://www.amazon.com/Non-Designers-Design-Book-Typographic-Principles/dp/1566091594 http://www.amazon.com/Non-Designers-Design-Book-Typographic-...

h34t 17y ago

This summer I met another guy who had chordoma, Josh Sommer. He's done a lot of amazing work helping to spark more research into the disease. Your page was the last kick in the pants I needed to look up a fundraising email he'd sent me awhile back and make a small contribution. Thank you. When Josh first told me about chordoma, the question I asked myself was, "How can any disinterested party rationally decide to support a rare disease, when other diseases affect more people?". Your chart/discussion about the possibility of there being a higher ROI for rare disease research than for 'well established' disease research finally got me over this hurdle. Even though it has no numbers behind it, so I am not left "fully convinced" of anything, it at least created the possibility-space in my psyche that perhaps there is more reason to go after rare diseases than I'd realized. In reality the emotional reason I have to give (having met Josh) is still a big reason why I care, but the attempt at a rational argument was the little nudge that pushed me over the edge: What if there are many such rare diseases that could benefit immensely from just a small fraction of the research that the big ones get? ...And what if studying these edge cases will also result in unexpected discoveries that have other implications? "The more astute reader might immediately challenge this graph" line helps too. It makes me feel confident that you aren't trying to skew things one way without fully acknowledging the limits of your knowledge and the bias you hold. Small comments: * the "cash is king" line put me off a bit, and I think it could be erased without losing any oomph. In the big picture, it's not just about cash, it's also about getting scientists interested, helping coordinate the research, all sorts of things. (Though it's true that cash may be the only way for a normal person to contribute)

chasingsparks 17y ago
Deleted the Cash is king comment. You're the second person to say that. There is also an edge case potential. That is another point i will add to the page in a bit. Re: Josh. We're not strangers ;) http://pathdependent.com/2009/11/04/preface_to_fundify/ http://pathdependent.com/2009/11/04/preface_to_fundify/ P.S. Thanks for the contribution!
- h34t 17y ago
  You are most welcome. It is difficult (though not impossible, my life hasn't been without blemish) to imagine what it must be like to have a prognosis like yours. I admire everything you are doing to combat it.

anonjon 17y ago

It needs an index on one side to the pertinent parts of the website, and an index on the other side with links to the different foundations/places to donate. My initial reaction was disorientation because of the lack of navigation and the huge font. Also you might want to try try offsetting the main text from the white background using a slightly darker (greyish) color. You can do all of this relatively easily using css. Giving the header an (offsetting) background color might help as well. You also might want to use a smaller font for your body text (and add in more text even if you don't expect people to read it all).