Tuesday, July 20, 2010

CFF events, cardiovascular activites, why, oh why?

Since I wrote the below email, I did receive a follow-up email stating that in the future, this event will have a box on the invite that directs those who want to volunteer or participate without climbing, to contact the CFF office. I take that as a little bit of progress?

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!'

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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,
Thank you,
Cystic Gal [Real Name Here}

On Thu, Jul 15, 2010 at 1:51 PM, Cystic Fibrosis Foundation, [...] wrote:

July 2010

CLIMBING FOR A CURE
47 FLOORS, 94 FLIGHTS, 1,034 STEPS - STRAIGHT UP!


Good Afternoon!

Whether you are an avid climber, a CFF supporter, or both, please visit[edited] to register online or to make a donation to the Cystic Fibrosis Foundation's 21st Annual Climbing for a Cure!
This fun, high energy event will be held on Thursday, November 18th, 2010 at the US Bank Building in Downtown Milwaukee. After participants climb to the top of the tallest building in Milwaukee, they will have the opportunity to enjoy amazing panoramic views of the city before heading down to the post-climb reception complete with food, drinks, entertainment, and awards!
For more information and to register online today, click here!
FUNDRAISE TO FLY:
The KEY to FUNDRAISING is SET A GOAL & START TODAY!
All participants who raise $1,000 or more by November 18th, 2010 will have their name placed in a drawing for one pair of roundtrip airline tickets courtesy of Frontier Airlines!Restrictions apply.
A SPECIAL THANK YOU TO:
Frontier Logo
START YOUR FUNDRAISING:
Climbing for a Cure is a pledge-based event with each participant raising a minimum of $50 in pledges to participate and to receive a Climbing for a Cure T-shirt!
Here are a few FUNdraising ideas to get you started!
  • Do an online letter writing campaign!
Once you register online, you have the opportunity to edit your personal 'Climbing for a Cure' webpage with a meaningful message and favorite photo, create your fundraising letter to email to supporters, make a donation and view donations. You also have access to other fundraising tools such as, the fundraising tool kit, videos and more!
  • Hold a Jeans for Genes day at your office or your child's school!
  • Ask your favorite restaurant or local bank to get involved in a pin-up campaign.
Please click here for additional fundraising ideas. For further ideas and/or additional assistance, please contact [edited] at the Cystic Fibrosis Foundation.
Net proceeds from this event will go toward CF research, care and education programs.
Thank you for taking steps to help add tomorrows everyday to the lives of the 30,000 children and young adults with cystic fibrosis.
Sincerely,
[edited]

4 comments:

  1. C'mon, set a goal and start today! Don't you want some free airline tickets?

    ReplyDelete
  2. Great example of why their proper reply should have been "Beth, you seem to have some concrete boots on the ground ideas of how to improve our outreach to this important audience. Would you be willing to work with me going forward to improve our service?" And I'd be willing to bet what your reply would be.... YES

    ReplyDelete
  3. Yeah! Whatever did happen to Bowl for Breath? That's what I grew up doing every year so I could get my annual Toy-R-Us gift certificate for raising a ton of money.

    ReplyDelete
  4. @Dad, thanks!!

    @JP, I know, RIGHT? The Bowl for Breath was the event my high school use for National Honor Society points. I was not in NHS, and wrote an essay for my English teacher wanting to know where my goddamn extra credit points were for actually having Cystic Fibrosis. She did not enjoy my essay.

    ReplyDelete

Thanks for commenting! Your comment will be posted ! -CG