

Chordoma Cancer Sucks (Feedback Please) - chasingsparks
http://chordomasucks.com/

======
chasingsparks
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
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
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
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
_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.

------
h34t
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
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/>

P.S. Thanks for the contribution!

~~~
h34t
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.

------
byrneseyeview
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
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.

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csmeder
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&#...</a><p>Take a look
at the chapter above she shows some good examples of how to integrate images
into a layout.

~~~
chasingsparks
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
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-...](http://www.amazon.com/Non-Designers-Design-Book-Typographic-
Principles/dp/1566091594)

------
megamark16
Here's a little graph:

[http://www.google.com/trends?q=Colon+Cancer,Breast+Cancer,Pr...](http://www.google.com/trends?q=Colon+Cancer,Breast+Cancer,Prostate+Cancer,Lung+Cancer,chordoma&ctab=0&geo=all&date=all&sort=0)

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
why does the trend for "breast cancer" spike around q3?

~~~
chaosmachine
breast cancer awareness month

------
megamark16
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
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?"

------
edu
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.

~~~
chasingsparks
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.

~~~
edu
I guess it's a difficult choice, I'd stick to the one that feels more
authentic to you. It's impossible that everybody likes it.

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wmeredith
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
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.

------
anonjon
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).

