Need Advice re: Susan G Komen

[carolp]

so much has come out about sgk since the Planned Parenthood debacle. They spend way too much of their money on advertising and first-class plane tickets. I have supported them in the past, but after looking at their finances, I will never support them again. There are so many organizations out there that have a much smaller overhead with more money going to research and treatment. No way I'd wear one of their jerseys and no way do I think you should order them.

[Biciclista]

I wouldn't. The name is toxic right now. I bet you are not the olnly customer that cancels.

[Pedal Wench]

Everyone is definitely entitled to their opinions, and I certainly hope that no one will stop supporting SOME type of research. If you've got time, here's a blog post by a brave young woman I met on the 3-Day named Bridget. She was diagnosed at age 21 with Stage IV cancer, with no family history. She's why I continue to fight. I can't leave her out there fighting alone. It's a long read, but it's why I can't turn away.


Many of my friends, family, and blog readers have approached me over this past week because anyone who knows me knows I am in love with the work of Susan G. Komen for the Cure; I am a walker, a survivor, and a 3-Day Coach. Last week, when the news broke that Komen for the Cure decided to cease future funding of Planned Parenthood, thousands of women and men hit the internet to object. I will not revisit last week’s media firestorm. Plenty of people have already done more than enough recapping of every twist and turn.

Instead, I will share the reasons why I continue to support Susan G. Komen for the Cure. I will include links to absolutely everything I mention, so that anyone interested in learning more can learn more, and can do so by going directly to the source.

Deb
When I was first diagnosed with Stage IV breast cancer in 2005, I went to events put on by various other breast cancer organizations. At those events, I was surrounded by women with gray hair and grandchildren. I came home in tears, and felt so much older than 21 years old. Other organizations left me, a young cancer survivor, feeling so very much alone.

Deb, a 30-something breast cancer survivor, changed all that for me. It wasn’t until Deb, a spunky little gal with flowing brunette hair, a sweet Southern drawl, and two little boys, stopped by my chemo chair one day that I finally realized I wasn’t alone at all. You see, Deb stopped by chemo to drop off literature about her support group called Breast Friends, a support group funded in part by Susan G. Komen’s Maryland Affiliate. Breast Friends was a support group for women under 40 who had been diagnosed with breast cancer. At the time, I didn’t even know there were other women under 40 with breast cancer, and this same wonderful Deb didn’t just offer support. She also offered education. Deb was the first to say, “Bridget, you should tell your story. You should go to schools and tell your story. You could save some lives.” So, you see, Komen gave me support and Komen gave me a voice.

Ann
Komen’s impact on my journey didn’t stop there. In the past six years, I have seen 10 different doctors about this cancer, and, while every doctor saw my concerns about having babies and getting married as understandable concerns for someone in her 20s, no doctor actually took those concerns to heart. No doctor, that is, until Dr. Ann Partridge at Dana Farber Cancer Institute. Dr. Partridge, or “The Boss” as she is known around my house, never told me to “worry about that later.” Instead, she helped me take action to preserve my fertility. She offered to plan my chemotherapy around my wedding and honeymoon. She offered me a chemotherapy drug that wouldn’t cause hair loss, so that I’d look my best when I walked down the aisle. She even offered to answer any questions my soon-to-be husband might have about my cancer before the Big Day. Now that’s a doctor! Dr. Partridge is the kind of doctor who thinks about the well being of the patient and the well being of the caregiver.

I am proud to say that Dr. Ann Partridge’s Young Women’s Program was funded by a three-year $1.35 million Susan G. Komen for the Cure grant. Not only that, but in addition to providing this program to lucky Dana Farber patients, this Komen grant allows “The Boss” to implement her Young Women’s Program in hospitals across the country, so that every young woman can get the same stellar, personalized care I’ve received regardless of where she happens to live.

So, as you see, I was supported by Komen, I was empowered by Komen, and I was cared for by Komen. But, have I been cured by Komen?


The Cure
I can honestly say: I wouldn’t be alive today if it weren’t for the research of Susan G. Komen for the Cure.

I have been on 15 different drugs during my six year battle, and every single one has been touched by a Komen for the Cure grant, including Herceptin. Herceptin is a drug that targets my particular type of breast cancer and, in clinical trials, Herceptin has been found to reduce the risk of relapse by almost 50%. Herceptin has been the one constant in my dozens of “chemo cocktails.” Herceptin is in my current cocktail; it’s being used in combination with my friend Taxol. Herceptin is not a cure, but Herceptin is keeping me alive, and Komen gave me Herceptin.

But that’s the past. What about the future? Well, I can tell you that currently, Komen is funding 572 research projects totaling more than $300 million worldwide. In 2009, “The Boss” referred me to a clinical trial led by Dr.Leisha Emens at Johns Hopkins University. Dr. Emens is developing a vaccine that teaches a patient’s immune system to fight her breast cancer on its own, and the trial is having some fantastic results. While I was unable to get the vaccine because my cancer began progressing unexpectedly, I believe this vaccine idea could truly be the future of breast cancer care. Dr.Emens’ trial was funded in 2006 by a $300,000 Komen grant. To learn more about the other exciting clinical research that Susan G. Komen funded last year alone, click here.

I Will Walk
Last Wednesday, when this news first started breaking in the media, I was at the hospital getting chemotherapy. I thought that was pretty ironic…my afternoon was about to get even more ironic! That afternoon in the hospital actually helped me deal with the onslaught of unsettling news stories. Last Wednesday, during a routine blood draw, I found out that the tumor markers in my blood had increased from 75 to 99, a preliminary sign that my chemotherapy regimen might no longer be working. When the whole world began debating and questioning Susan G. Komen’s work, my cancer turned out to be a gift. I needed a reminder, and this news was a poignant reminder. I was able to see that, for me personally, the news about Susan G. Komen mattered, but it didn’t matter enough to sway me from the heart of why I walk.

So what did I do after I learned that my tumor markers rose from 75 to 99 last week? How did I cope with the news? I registered to walk in the 2012 Susan G. Komen Washington, DC 3-Day.

I walk because I have to go to chemotherapy every week, and I don’t want anyone else to have to live that life. I walk because I live with the heavy burdens of fear and doubt every day, like the fear and doubt piercing my heart tonight as I think of my rising tumor markers. I walk because I know that over the past 6 years I have been on 15 different drugs, and all 15 of them were touched by a Susan G. Komen grant. I walk because, while there are other charities out there, no one comes close to funding research the same way Komen does. I walk because this cause is too important to walk away. I walk because today someone is going to die from breast cancer, and I walk because I don’t want to die from breast cancer.

No other organization has had my back like Komen for the Cure, and now it’s time for me to return the favor. Together, we will move past this. I believe we have already started moving, and I believe we are moving forward. I believe we will come out of this better, wiser, and stronger than before.

I hope each of you will be walking beside me this October, but I understand if that’s not the case, and I respect and support that. I wish all of you all the best. You are important to me, and I thank you for your service to this event and to the fight for a better world.

[OakLeaf]

I'm glad they helped Bridget. I don't think anyone said Komen never helped anyone ever. But you know, emotional appeals are no way to judge a charity, and just because I feel genuine empathy for Bridget doesn't mean I'm required to feel any sympathy for Komen.

[Pedal Wench]

Never said anyone had to be empathetic. I know that I personally needed a reminder of the good to erase the anger and frustration I felt last week. Bridget put it back in perspective for me. I donated a huge chunk o' change to PP last week, and now I can move forward in fighting cancer.

[Wahine]

Just another post to say that I will not buy anything associated with SGK foundation.

While I believe strongly in supporting charitable organizations, I won't keep supporting one that has lost sight of charity should be about, compassion for all people in need and supporting the other organizations around trying to do good work as well, not suing them.

I supported many of the SGK events in the past. Then I stopped when I got wind of how little donor money makes it to research etc.

I supported Athletes for the Cure for a couple of years. Then I got wind that they were threatening other organizations with lawsuits. I no longer support this organization either.

A lot of these organizations started out doing the right thing, with all of the best intentions. But that doesn't mean I'm going to continue to support them when they are no longer behaving ethically.

There are a ton of ground roots charities out there to support where your money and/or time have a much better chance of making the world a better place.

[MomOnBike]

Chiming in late here.

Even before I was diagnosed with breast cancer, I would not have been inclined to buy the branded, over-hyped pink Stuff. Don't like the color, really didn't like the guilt trip.

When I was diagnosed, I rather surprised myself and decreed that I would NOT appreciate any *&%%^$##@!!! pink anything. (I requested hats, instead).

My opinion has not changed. I'd not buy any SGK stuff, ever.