Ladies....I have some bad news about the OC Quilt (and the NOCC)

Alexandra said:

Dear Gal

Congratulations on being an OC survivor and welcome to the board.

Your response to an obscure 2-year-old post where several contributors have passed away and a passionate sermon for nonprofits is very unusually phrased...for a woman.

I would love to hear your own cancer journey story and learn more about your fabulous experience with NOCC.

Best wishes, 

Nocc

Stand for for  national ovarian cancer center?

GalforGood said:

Let's broaden the discussion

I realize that this conversation started a long time ago, but when I came across it, I just had to comment.  There's never any excuse for rudeness, and that's a law that I live by: You can say anything that you have to say nicely.  However, I would caution against publicly blasting and boycotting an entire organization based on a couple of incidents.  I am an OC survivor, and I've had nothing but a fabulous experience with NOCC, its staff and events.

I have also worked for many nonprofits, and almost without exception, they operate on a very thin operating budget relative to whatever they are trying to accomplish.  When you have too much work, too few people and even less funds, mistakes and frayed nerves are possible on occasion...even though, they should strive for 100% satisfaction all the time.  (However, I hope the comment about the purse was a misunderstanding, because that is unimaginable.)

To the woman who said that her father was president many times without pay... that is wonderful that your father volunteered on so many Boards, but are you suggesting that nonprofits should have no paid staff much less at competitive salaries.  Staff salaries are a valid and important part of program overhead.  We all have to make a living, and why should only oil, technology and other for-profit executives make good salaries?  People who work for nonprofits do it, because they love it.  They typically could make much more money elsewhere, and I ask you to imagine if we recruited the TOP talent in the country to take on the issues of poverty, hunger, education and disease instead of paying them the least what could be accomplished.  Please watch this video from the TED conference, which eloquently illustrates what this concept could achieve:
http://www.ted.com/talks/dan_pallotta_the_way_we_think_about_charity_is_dead_wrong.html

I sincerely hope that you'll take the time to watch this video, because it is time for more progressive thinking when it comes to charities so that we discontinue the old, small version of a nonprofit for one that SOLVES problems and CURES diseases.  There are a lot of people out there that have school loans from college and graduate programs that would still like to send their own kids to college someday to be the researcher that cures a disease like cancer...I hope that these people aren't forced into other professions.  Could you imagine a social entrepeneur that raises $100 billion for research instead of for Exxon or Apple?

Imagine the possibilities.

Walk away

Thanks, Alexandra, for putting my thoughts into words.  (We missed you last week!)

Best thing for us to do is walk away from this Thread.

Our hearts, shoulders and ears are open to anyone who comes to this board to share their cancer experience, but we won't be dooped or scammed or phished.

Walk away, sisters.

Hissy_Fitz said:

Thank you, Lisa

Thank you, Lisa, for being such a stand-up friend.  

I did indeed put a lot of work into the NOCC quilt, as did many other women.  Mary and I made over 20 beautiful squares, mostly for women on this board.  Sadly, only three of those ladies (myself, Mary K and Lesa G) are still alive.  It was a beautiful quilt, and I am the first to acknowledge that the unfortunate events surrounding the raffle were not intentional acts of dishonesty.  It was sloppy administrative work and the person most responsible for the entire debacle (the national Treasurer) was on-site and refused to take any remedial action.

In addition, the organization (NOCC) failed to comply with State law in conducting the raffle.  TX law has very specific criteria for non-profits conducting raffles, and the NOCC ignored virtually all of them.

The Treasure was paid, according to the organization's form 990 for the previous year, an annual salary of $92,000.  I think that for 92K, any officer of any non-profit should be held to a relatively high standard, and should, at the very least, not break any laws in the performance of his/her duties.  

Anyone, of course, is entitled to their opinion on the subject, but that's mine.  It has not changed since my original post, but I have not made any attempt to keep the topic "alive."  I said my piece and moved on.  The person who "just had to comment" on my experience with the NOCC does not appear to have made another post, either before or since.  Curious, don't you think?

Carlene

 

Only three of us?   My God.

Only three of us?   My God.  I've been away a long time, too long ;(.  

 

It's been just over 3 years since my diagnosis.  I'm still trucking along!  Last CA was 14, up a bit from 12, but not statistically significant.  

 

As for the NOCC, the only cancer organization I urge people to donate to these days is the AMERICAN CANCER SOCIETY.  Any cure for any cancer benefits all of us.  

 

Just imagine what would happen if all the foundations, and other organizations pooled their money and spent it on finding a CURE.  Imagine what would happen if those making hundreds of thousands of dollars only took the average salary of the family of a  Cancer Survivor and donated the rest?  (They'd still make out pretty well, I bet).  

 

Just Imagine, what could happen if everyone worked together.   

 

(I feel like I'm channeling John Lennon! lol)

 

Anyway, 

 

Those are my thoughts.  

 

Hugs and Hope To All!

 

Leesa

 

bananaboat said:

Leesag

Hi, Leesag,

Its good to see you on the board how are you doing?  Since my loved one was diagnosed with brain mets from ovarian cancer, you are the only person on this thread that I am keen to follow, as I know you too had brain mets.  My loved one had multiple inoperable brain mets a few months ago and she is still quite fragile ie, balance issues together with no appetite.  She appears to be unaware of her symptoms  and believes she is quite alright, which is difficult for us to understand. She did have WBRT at the time of diagnosis, but her condition is worse now, than what it was before the radiation. Its so distressing to watch and second guess what is going on and she is not one to talk about her symptoms or how she is feeling.

Hi Bananaboat,
 
I'm

Hi Bananaboat,

 

I'm fortunate because my oncologists are all brutally honest, and my brain mets were met head on with neurosurgery, wbrt, and gamma knife.  Every time I see my radiation oncologist (every 3 months) he runs through the gamut of neurological testing to ensure that I'm good.  Then he spends about fifteen minutes just chatting with me about "stuff" in general.  This is how he makes sure that I'm processing things.  Additionally, all of my friends and my hubby keep a close watch on me to make sure that the slightest sign of a recurrence is addressed immediately.  ( I had to explain to my husband that I wasn't slurring my words because of a tumor, I was just drunk! lol)  

 

Encourage your loved one to share with you, no matter how scared she might be that it's still there or growing.  Keep a journal yourself of her symptoms to share with her oncologist.  The fact is this, trying to hide symptoms of a recurrence will be more deadly than a reccurrence caught early.  Perhaps if you share this with her from someone who has been through brain mets (I constantly ask others how I'm doing, because I no longer trust my own judgement) she'll feel more relaxed.  

All I can think sometimes, is that if someone had pointed out to me that there were speech issues, I would have been more outspoken to my doctor and would have been treated much earlier.

As it is, I am fortunate and blessed to be NED today.  

 

Hugs to you and your loved one!

 

Leesa

PS:  Diagnosed Stage 3c in January 2010 and still going strong!