Stand Up 2 Cancer

[paula29]

After watching Stand Up 2 Cancer last week, a program starring celebrities who were raising funds to "cure" cancer and which made no mention whatsoever of ovarian cancer, I contacted the address on their website to ask why they spoke about all forms of cancer except ovarian.

Below is the response I received from Kathy Weiss.  Below that is my response to her.  I hope you will be pleased with my answer.

----- Original Message -----
  From: Kathy Weiss
  To: p.***@****
  Sent: Friday, September 12, 2008 1:56 PM
  Subject: [StandUp2Cancer.org #230513]

  Thank you for reaching out to us and sharing your thoughts on the Stand Up To Cancer
  broadcast.  
  
  We have recently announced that from its launch on May 28, 2008, through September 5,
  2008’s historic simultaneous commercial-free telecast, the initiative has raised more than
  $100 million to accelerate ground-breaking research and bring new therapies to patients
  more quickly. Stand Up To Cancer is founded on the belief that now, more than ever, there is
  sufficient knowledge of the basic science of cancer, and that the technologies are finally
  available to translate this knowledge into real advances in treatment and prevention.
  
  Today’s cancer scientists are on the verge of life-saving discoveries. But what they
  desperately need are the funds required to mount an all-out assault. Stand Up To Cancer is
  dedicated to providing this much needed new source of cancer research funding.  Donations
  made to Stand Up To Cancer will fund research that will lead to and accelerate new treatment
  breakthroughs across all types of cancer.  While the campaign will address those
  breakthroughs that are most promising within distinct disease areas, it will potentially lead
  to new discoveries that can be applied across the entire spectrum of cancer.  There are over
  200 diseases called cancer and, unfortunately, we were not able to cover all of them in a one
  hour show.
  
  We appreciate you taking the time to offer your feedback and for your support.

  Best,

  Kathy
  StandUp2Cancer.org

Dear Kathy,

Thank you for your response.  I will post it on the Med Help site for all the ovarian cancer patients and their families who were summarily dismissed as not Important enough to be included in your program to read.

This week, I learned my cancer has returned in the form of a tumor and that I will need radiation therapy.  I just wanted to let you know that we are real people with real illnesses and real families who felt and still feel hurt and betrayed by your insensitivity.

Sincerely,
Paulette Markman

[nyc lady]

I have to tell you that our NOCC Chapter President also wrote a letter and received exactly the same response that Paula did....it is obviously a form letter as I am certain that they are getting letters from all over complaining that "our cancer" was not mentioned.

I know many people that chose not to donate to StandUp2Cancer, but made thier donations instead to Ovarian Cancer organizations.  

[paula29]

What a great idea.  Let's get the word out.

[vegas2cr]

Do Ineed to join the site to forward this.. send me a message in my private message so you can include the web site.. I went to the one and can't find where to forward my note.l Thanks Ronni

[Janet535]

May i suggest we all copy and paste the facts as outlined by "vegas2cr" and add our own words of disappointment in an email to the rather dismissive Ms Weiss.

Perhaps if ALL the ladies here were to do that and enlist the help of our family and friends to do the same we would get the recognition that OvCa is very real and very serious and shouldn't just be fobbed off!!

[paula29]

Please forward this to Kathy Weiss atStandUp2Cancer.org.  She needs to read this although she probably won't.  I want these people to know that there is more than one person angry about this!

Thanks, Paula29

[vegas2cr]

I ranted before but I wanted you to know that your beautiful letter has not gone unnoticed.. I have emailed it to everyone I know and they are as angry as you and me.

This is what we should have heard and this is copied from the ovarian cancer alliance group..How many lives would be saved..?????

What do we want to change?

That ovarian cancer is the deadliest gynecologic cancer and fifth leading cause of cancer deaths among women
That annually 20,000 women will be diagnosed and 15,000 will lose their lives to this disease
That 75 percent of women are diagnosed in late stages when the five-year survival is only 30 percent
That symptoms are missed, dismissed, misdiagnosed or diagnosed too late
That there is no effective early screening test
That many women are not treated by a gynecologic oncologist
That all health professionals do not know the symptoms of ovarian cancer
That all women do not know they are at risk for ovarian cancer
That there are inadequate resources devoted to research on ovarian cancer
That more women are not aware of, referred to or participate in clinical trials
That the incidence and mortality rates associated with ovarian cancer have not decreased

[paula29]

I survived Hurricane Ike and all I got was hot!  Our power went out early Saturday morning and just came back on Sunday at 2:00 p.m.  I hope it lasts.  We took a drive around the area yesterday looking for a grocery store or even a fast food place that was open but no such luck.  What we saw was incredible.  While most homes on our street lost only branches, many homes in adjoining areas lost huge, old trees that were torn from their roots by the wind.  

I heard downtown Houston is a mess with broken glass everywhere so the police have cordoned it off.  No one will be able to get to work tomorrow.  For now, we are grateful that the air is on and that the refrigerator is happily humming.  We have no cable, but we do have the Internet, thank goodness.  We don't realize how much we take these things for granted until we lose them.

I was supposed to begin radiation therapy last Thursday and Friday, but the storm took care of that.  I hope the cancer center will be open in the morning so I can get in and start treatments.  I am supposed to have four sessions.  I'll keep you all posted.

Thank you again for responding.  It's nice to know I am not alone on both fronts!

Best wishes to all,
Paula29

[gah_70]

Hi Paula,

I was just in Houston this past week for my 3-month round of tests last Friday, and my doctor visit on Monday.  I have been flying to Houston every three months for a year now to have MD Anderson take over my case, and I couldn't be happier I made that decision.  Anyway, that's off the subject, but yes, I noticed they were closed today, and was glad I had everything done last week.  

I, too, was disappointed that no gynecological cancers were mentioned when we all KNEW breast and prostate would be featured.  I also noticed Renal Cell wasn't mentioned, nor was Thyroid cancer, which are two that also mean a lot to me, and some dear friends.  I understand they have a script to follow, but I think they should have planned to mention other types than just those same ones we hear about over and over.  They lost their chance to mention some of the less common types that could have educated people who may never know a thing about them until they get them.  I appreciate the idea of the show, but was very disappointed in the production.  Had they consulted cancer patients around the country, I bet their show would have taken a decidedly different path.  

I send you well wishes as you begin this journey again.  I know you've been there/done that the first time, so I'm wishing you much strength as you start this fight a second time.  Please keep yourself safe this weekend.  I left on Wednesday, and I'm thinking I got out at the right time.

Gail  

[paula29]

I am glad that we are taking action to be recognized.  Ms. Weiss' "babble" was meaningless and rather than soothe, it infuriated me even more than their original ommission.

I just arrived home from a week in the hospital where i learned the cancer has recurred.  I was scheduled for radiation on Thursday and Friday and was to be taken by ambulance to the cancer center but there were no ambulances available due to the mass evacuation in anticipation of Hurricane Ike.  The cancer center was closed today (cowards!) so I could not get through to make an appointment for Monday.  My life is never dull!

Paula29

[abrite]

They don't get it, do they?  I would like to know how they determine which cancers are deserving of funds for research and exactly what percentage of the money is dedicated to specific cancers.  

I support the Women's Cancer Research Foundation as it is dedicated to "increasing the cure rates of women with gynecolgoci cancers" and conducts many nationwide clinical trials specific to OVCA. I have had the privilege to be on 2 of their trials and have been extremely impressed with their dedication to finding a CURE. Here is their website for those who may be interested. http://www.****.***

Keep fighting ladies!

[mariebean]

I sent a message them as well and got the same canned response, verbatim.  Infuriating!  Thanks for speaking your mind and letting them know how disheartening it was not to be included.  

Marie

[paula29]

Dear Sharon,

Thank you for your kind words.  I felt like donning my Super OC cape and defending our honor!

Paula

[bohan54]

Thank you for being our very articulate voice on this subject.
Sharon B