Also, just this morning, I was invited to a walk-athon- several miles, for CF, that also did not have any information on how to participate if one was not able to do the long walk. ? But because this theme has overwhelmed this damn blog this week, I will spare you that email exchange.
The bottom line is, if you're going to invite me to a CF Fundraising event, you better make it clear to me how I, a patient with end stage lung disease, could support the event other than just giving money. As a theatre administrator, I have never worked for a theatre company that did not go to great lengths to advertise the ways in which their events are accessible to all audiences - why does a organization that serves a community with accessibility issues completely ignore them, I do not understaaaaaannnnnnd!'
k-read below, oh and then vote for my picture on CustomInk.Com so I can get $100 off my next order: http://inkspot.customink.com/iotw/photo/the-cystic-gal-chillin.html
This seems to be an event that many adult CF patients, like myself, would not possibly be able to participate in. Is that the point of it, like its supposed to be a play-on the idea? If so, that needs to be articulated.
Is there some way to make the event accessible? There is no mention on the invite of how/if a person who cannot climb a million flights of stairs could participate and gain pledges. Couldn't there be a simple message that non-climbers could gain pledges and take the elevator up- its about the donation, not the athleticism--- right?
I am continually confused as to why the CFF plans almost exclusively cardiovascular fundraising activities and alienates much of the actual CF population. Whatever happened to Bowl for Breath? Now that's an event that everyone can participate in.
Don't get me wrong, I think every fundraising attempt is great and for a good cause, but people are always asking me to articulate why I don't think the CFF adequately supports the adult population, or reminds parents of children with CF that there is an active, thriving, growing adult population - by hosting events like this one that might as well say,
IF YOU HAVE ADVANCED LUNG DISEASE, YOU CANNOT PARTICIPATE. PLEASE STAY HOME BUT DONATE ONLINE. WE'D RATHER NOT ACTUALLY *SEE* YOU.
Just my two cents,
Cystic Gal [Real Name Here}
On Thu, Jul 15, 2010 at 1:51 PM, Cystic Fibrosis Foundation, [...] wrote: