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

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

As many of you know, today was the NOCC (National Ovarian Cancer Coalition) 5K in my area (Dallas/Ft Worth), to raise money for research and awareness for OC.

I joined NOCC in early 2010, at the urging of my doctor, who was (and may still be, I'm not sure) on the Board. I walked the full 3.5 miles last year in the rain, even though I was still in treatment. Plus helped plan/work the event.

This year, because of my hernia surgery, I could not do as much, but when someone suggested an OC quilt - one square for each survivor or teal angel - I jumped at the chance. Mary K helped me out with some of the squares, and she did the beautiful embroidery on all of them. We did 17 squares, all together. The quilt required 30 squares, and they only got 39 donated, so if you do the math, it's pretty obvious that without our contribution (and hard work) there would not have been a quilt to raffle off.

First off, I asked them if they would pre-sell tickets. They not only said "No' to that, but decided that you had to be present to win. Okay....their party, their rules, though I did not understand (and still don't) why they would turn down an opportunity for extra money.

Someone (Nancy M, I think) also suggested that having a nice photo of the quilt made into a poster, and duplicated at Kinko's might raise another pile of cash. For some reason, that idea was nixed, too.

Fast forward to today. I go straight away to the tent where the quilt is and (A) ask if they would hold it up so I could take pictures. No problem. And (B), I then buy $40 worth of raffle tickets. There were two quilts, but the other was just teal ribbons - no individual names, etc. I said THREE TIMES, "I just want to buy tickets for THIS QUILT," and I patted "our" quilt. They sold me 10 blue tickets. The other tickets were red.

When they drew the "winning" ticket, I knew immediately it wasn't one of my numbers. BUT...my husband noticed that the ticket was RED. I RAN over to the tent where the quilt people were and practically yelled, "They did the drawing wrong! You have to make them do it over!" Long story short, they refused. "Mistakes happen," they said. The (paid) staff were there and one had the NERVE to ask me if I had donated the squares only because I hoped to win the quilt.

The real kicker was that a similar mistake was made earlier. A man who had the wrong number came forward and picked up the prize, then walked away. After the true winner approached the stage and identified herself as such, they called the man back and gave the prize to the rightful winner.

I will NEVER do a single thing to support the NOCC again. I am in the process of contacting all their sponsors, as well. I did not want extra consideration for my efforts - only a level playing field. I wanted the same chance as anyone else who paid their money to win the quilt. But I got zero chance, and I feel cheated, used, and discarded.

I found the "winner" of the quilt and offered to buy it from her, and to make a memorial wall hanging for Jenny (her friend who also had a square on the quilt). She said she would talk it over with her "group" and call me. Of course, she didn't, even though the last words she said to me were, "I promise I'll call you; I'm an honest person."

I apologize for the rant. I just feel so betrayed right now.

Carlene

poopergirl14052's picture
poopergirl14052
Posts: 1159
Joined: Nov 2010

so sorry for you, I know you worked very hard to get the quilt finished. Mistake s happen , yes, but the worker should have corrected their mistake right then and there, instead they ignore your feelings when you tried to make it right.I am sure your teal angels know how you fought for them. I wish I could do something...val

msfanciful
Posts: 580
Joined: Nov 2009

Hello Carlene,

Unfortunately, I have witnessed many of these same types of incidents with these "non-profit" groups.
It angers me that you made such a valiant effort to make this fundraiser work and the group just blew it off (so to speak).
I think what we have here is that "their" efforts are all about the money only and not about truly "helping" to teach, spread awareness and save lives through their organization. Usually this appears to happen when some person who has no inkling or clue about "our" cause is running the whole show. :-(

I know you let them have it Carlene, and they may have knocked you down for now, but I know you won't let that deter you, if anything I know you'll come back swinging!

We will always need your fighting spirit and knowledge to get through spreading awareness about ovarian cancer. It's wonderful people like you that will make that happen.

I guess I'm saying your efforts have not gone unappreciated by the real warriors.

The fight continues.

Love,
Sharon

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

I just can't believe people would do such a thing, but they just don't seem to care. Carlene I know you put your heart and soul into that quilt. And all your love for each teal sister. You did a wonderful thing and don't you forget it. We all know how hard you worked on that.

((((hugs))))
Linda

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Yesterday may have been God's way of telling me to disassociate myself from the NOCC.

I could not find a form 990 for the NOCC since 2009, but for that year (the last one published on their website was 2007), but their 2009 form 990 is available online, for free. Google it if you doubt any of this data.

Total revenue (including grants) - $2,695,977
Salaries of $1,174,837
Total Expenses of $3,261,818

In Jan - May of 2009, the CEO of the organization was Carol J Ansley, and she pulled in a comfy $107,523 for FIVE MONTHS WORK.

Katrina Kuzniuk, Director of Finance, was paid $90,002.

Jack Walton, Director of Development earned $116,010

And Luann Anderson, Director of Operations was paid $100,06

"Other Salaries and Wages" was reported as $783,973

Pension Plan Contributions and Employee Benefits ate up an additional $37,387

Accounting costs were listed as $39,475 and "other" as $190,757 (that's a lot of "other").

Office Expense.....$397,430
Advertising and Promotion....$333,614
Travel...$129,024

Awareness Events, it says, cost them $519,130

Sorry, but I'm not feeling the love here. For an annual outlay of "salaries and wages" of almost $2 million dollars, plus perks, I think they could have done a better job Saturday.

In addition to the fiasco with the quilt there were other issues. They ran out of numbers, which meant that people who registered late were not eligible for any of the "free" drawings (meaning other than the raffles). They were charged full price anyway and told to "consider it a donation to the cause." Worst of all, there was vehicle traffic permitted on the run/walk route while the most vulnerable "stragglers" were still walking: elderly people, cancer survivors, and those with small children. There were no signs and volunteers refused to do anything about a VERY dangerous situation.

Last year, while we were sorting raffle items, one volunteer overheard a paid staffer admire a teal Coach purse that had been donated, saying, "I hope this doesn't go to a survivor!" Yeah.....class act, for real.

Carlene

Hen's picture
Hen
Posts: 14
Joined: Sep 2011

God bless you, Carlene for your wonderful work and for providing us with credible information about the NOCC. Some years ago I began looking into national charities and was stunned to learn that one that was a favorite of my family's, the DAV (Disabled American Veterans), had a CEO with a salary in excess of $700,000 per year. Your findings will have me investigating every organization I support for ovarian cancer research and care.

Additionally, the fiasco with quilt was just that.

Keep up the good work!

Sharon

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

Carlene I am sorry this happend to you my friend

froggy1
Posts: 208
Joined: Nov 2008

Whatever happened to true volunteerism? I am so hesitant to donate to anything anymore because I hate my money to go to some overpaid executive.
In the "old" days, my Dad was president of every civic organization around and never received a dime. Some of these salaries are just crazy.
To think people at NOCC are making these kind of salaries,thanks to our horrific disease, is deplorable. I know this is the "new" norm for charitable organizaions, but it still bugs me.

ocalalaurie
Posts: 34
Joined: May 2011

You said my feelings exactly: "not feeling the love"!

Give 'em heck, Carlene! This is just not right!!!

mopar
Posts: 1950
Joined: May 2003

Carlene, I'm so sorry to had to deal wth all of this. After all your hard work, personal contributions and participation over the years, this is just not right. Not to mention all the others involved with the NOCC that may not be aware of everything you've shared with us. There's just no excuse for all of this. This is so disheartening. Let me know if you need an extra letter to go out. I would be more than happy to write one on your behalf, and it would not be that out of the ordinary since the ladies on this board have been somewhat involved as well.

Sending big hugs to you, Carlene. God bless you for your tireless work.

Monika

kayandok
Posts: 1223
Joined: Jun 2008

Carlene, mainly because I don't live here, I'm not very informed about all these groups that raise money (supposedly) for all the cancers. It really grieves me to read about your experience and the way that the organizations are apparently run. Is there any ovca group out there that is truly raising money that does go to help cure cancer? What can WE, as survivors do to raise this awareness and to make sure all the money raised goes where it is supposed to go?

I can tell I am recovering well because my fiesty bone is back! And my "rightious anger" is boiling. Let me/us know, Carlene if there is anythig we can do, please!

Carlene, please don't feel your work for the quilt etc was in vain, though. Ultimately, you know that GOD keeps all the books, and HE knows exactly what went on. Your work and efforts were not in vain, but in fact, blessed and encouraged so many of us!!! I do feel badly that you could not buy the quilt and that you were treated so badly!!!

Carlene, you rock BABY!!!

love ya,
kathleen

cfont11
Posts: 115
Joined: Mar 2011

Carlene,

I am so sorry you had to go through this. What a terrible experience when it should have been a very happy event. You have done all you can do and unfortunately cannot control the actions of others. God (and all of us) know what a good person you are. Thank you so much for the financial info on the NOCC. this is a group I have been interested in but the only chapter in NH is far away from me and is very small. I have been told that the people who run the local chapter are all survivors so maybe they have a different attitude than the paid staffers. Not everyone who works for a non-profit are truly altruistic, they just look at it as any other paid job. It was great that you spoke your mind and stood up for all the survivors. Keep up the good work!

Chris

MK_4Dani
Posts: 318
Joined: Sep 2009

The only charity I donate to is the American Cancer Society. I have first hand witnessed, or heard about good things they do for cancer patients. The Look Good Feel Better program, (whatever it is called), my neighbor received gas cards for travel expenses to treatments. The woman who was the representative at my hospital was very kind and was in the treatment area talking to patients: giving advice, helping answer questions, etc. I saw her EVERY time I was at the hospital.
Mary

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I called up the CEO today and we had a long chat. I basically promised to cease and desist until he gets back to me in a couple of days.

The internet.....tool for good AND evil. Ha ha.

Carlene

MK_4Dani
Posts: 318
Joined: Sep 2009

Get 'em Carlene, don't let 'em up until they say "uncle". A real nice apology and a list of lessons learned that all NOCC chapters should follow when conducting raffles and such.

P.S. In my county a non profit has to get a raffle license with strict rules. Does your county have raffle license requirements?

Mary

wlkdnose
Posts: 45
Joined: Jun 2011

Wow...I am speechless. I am doing the NOCC walk here in NH on Sunday. I hope as mentioned above that the NH chapter is run a little better. Those salaries are staggering and I cannot believe they make that much. Sounds like they are raising money to raise their personal incomes :(

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

I am so sorry to hear this Carlene--it really upsets me to hear how the whole situation turned out. You still got some money donated for the cause at the end of the day.

(((HUGS)))

LQ

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

The salaries are indded that large. Here is the link to their 2009 Form 990.

http://dynamodata.fdncenter.org/990_pdf_archive/650/650628064/650628064_200912_990.pdf

I think all charities should be required to put a link to their most recent 990 on their website, if they have a website.

Carlene

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

They have no idea what they have gotten themselves into. You do so much for us all and it is very much appreciated. Thank you so much!!!!!!!!

GalforGood
Posts: 1
Joined: Mar 2013

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.

Alexandra's picture
Alexandra
Posts: 1224
Joined: Jul 2012

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, 

2timothy1 7's picture
2timothy1 7
Posts: 336
Joined: Jan 2012

Stand for for  national ovarian cancer center?

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Well, Im a little defensive since most of the women who commented and wrote this post have passed away and I wonder what your agenda is since there has not been one comment about this for a year and a half. Also, I just found out today that Carlene (hissyfitz) who has done amaing things for OVCA has a recurrence since her second and third chemo haven't worked. I'm devastated about that. I'd like to hear more about your cancer and less about the pros and cons of certain charities. Hizzyfitz put a lot of work into this quilt that ended up in WA. My mother was one of the squares......and they were rude to her...period....as far as broadening the discussion, there hasn't been any more discussion for a year and a half. Sorry if I'm defensive but,,,,,,,

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

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

 

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

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

 

wholfmeister's picture
wholfmeister
Posts: 259
Joined: Dec 2012

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.

bananaboat
Posts: 4
Joined: Jan 2012

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.

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

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!

 

 

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