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June 26, 2010

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June 26, 2010

After my mom died 26 yrs ago, I went through many yrs of confusion and fear. I don't even remember how I found OCRF, but I've spent time reading tributes and memorials to find that I was not alone. I can't believe that since my mother's diagnosis 28 yrs ago, there really is not any new tests for this cancer. It is a frightening one that masks itself as something else. OCRF has carried the torch when I didn't know how to keep it lit. I plan on participating on Super Saturday even if I don't buy anything at least I know I donated to it and I will continue to do what I can.

The Great!

I've personally experienced the results of this organization in...

becoming a part of this community

Ways to make it better...

If I had to make changes to this organization, I would...

I would get more funding for the only charity specifically for ovarian cancer research.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

I HAVE NOT BEEN DISAPPOINTED

The kinds of staff and volunteers that I met were...

QUICK TO RESPOND AND COURTEOUS

If this organization had 10 million bucks, it could...

SAVE COUNTLESS WOMEN

Ways to make it better...

WE DIDN'T NEED THIS ORGANIZATION

In my opinion, the biggest challenges facing this organization are...

FUNDING RESEARCH FOR A SILENT KILLER

One thing I'd also say is that...

THIS IS A HORRIBLE DISEASE THAT NEEDS TO BE RESEARCHED NTIL THERE IS A CURE.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 17, 2010

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June 17, 2010

Ovarian Cancer Research Fund is so so important and the fundraising efforts, events, donations and awareness needed could not be described any other way but simply 'desperately needed'! To be honest, I might of heard of Ovarian Cancer prior to July of 2004 but not really sure, it's a big maybe. We've all heard of Breast Cancer, Cervical Cancer but the only time I EVER heard that term was when Gilda Radner died of it years ago. Not knowing anything about it, I definitely had no idea how extremely silent and deadly this can be. I live in Indianapolis and had traveled with my kids to a park called Kings Island in July of 2004. On a complete fluke chance meeting, I ran into a little girl and her mom that was a neice of one of my dance students. Shannon Kuklak Whiteside was a dance student of mine for many years since she was only about 5 or 6 years of age. Beautiful, sweet adorable little girl that you knew was going to be something absolutely great one day, cover of magazines and the whole nine yards. Everyone just knew. So while at the restaurant and seeing the neice, I went to speak to them. I guess God planned this chance meeting because Shannon was now a 24 year old married mommy and didn't see her as much. I was told that Shannon went in for a discovery surgery just a week prior to then and was told she had Ovarian Cancer and unfortunately it was in the 4th phase/stage and it looked as if cellophane wrap was layered throughout her entire insides. I don't think I had ever felt more devastated as I did that very moment. Writing about this makes me weak to this day as I relive it. Shannon and her sisters were my little girls, my best dance students and like sisters to me that I felt I had to protect, always. She just had a baby 7 months before...how could this be???? Unreal. Questions just came pouring out of my mind so fast my speech couldn't keep up. My children and I went back to the hotel and I sat on the bed in a daze. I began to fall apart and cried and sobbed uncontrollably. NEVER had I felt so helpless, sick, sad, horrified, confused and ANGRY in my life. I searched online and googled my weeks away trying to find something doctors could try..i read other stories of women and families online. I was baffled and very scared at everything I read. Silent killer..., not detected usually until late stages, the symptoms were very common symptoms of everyday issues for many, NO SCREENING or real way to detect! How could this be? How could it be that all the intelligence in our country alone knows how to get to the moon, knows how to make medicines that cure illness, know how to clone for God's sake, absolutely ridiculous amounts of money being spent of other planets we MIGHT get to live on one day??? ARE YOU KIDDING ME? How can they NOT know how to find this? Why don't OBGYN's just automatically do the CA125 just in case when they have complained of these symptoms?? Why do so many doctors act like we are crazy and always say it's nothing! I did everything I could to let her sister and brother and mom know that I WAS there for them, prayed for them, worried, couldn't sleep, just talked to them.. talked to Shannon, watched her sleep and observed the most amazing husband on the planet just care for her in every way possible. She was in her sister's wedding in September and looked radiant, she always does, glowed, somewhat tan, bright blue glowing eyes and big smiles. I wont' go into everything this girl had to have surgery for, chemo, removal of colon, blah blah blah, nothing was helpling and it was throughout her entire body. she asked that she be left alone, it's not going to help, let it be. Doctors knew too. She was moved to a hospice, her mother arranged for Chuck E. Cheese to come there and celebrate her son's first birthday, had another boy that just turned 3, and beautiful Shannon stayed awake here and there, smiled the best she could and beginning to appear more and more yellow. I actually could not go to work any longer. I couldn't go and function because it was all I could think about. I needed to see her each day even if only for ten minutes. Even if all I could do was go in and give her a kiss on the forehead...I had to. I wanted to sit with her family and let them talk. I mean, WHY can't we just do a complete organ transplant of every organ in her body!!! Why wasn't there a way for them to know before, SHE JUST HAD A BABY! Are we in the twilight zone here??? If she was stage 4 in July and just had a baby month prior, how didn't they know? don't they do bloodwork in pregnancy? don't they check blood in hospital after delivery? WHAT has happened here??? You want to just blame doctors for being idiots, you want to say everyone was just lazy and didn't do everything they could...who knows....but ultimately, THERE IS NOT ENOUGH KNOWLEDGE FOR THIS BECAUSE THEY NEED MONEY FOR RESEARCH! OCRF NEEDS AWARENESS OUT THERE. Who in the entire world doesn't know about Breast Cancer and a pink ribbon. I TOTALLY support that and don't get me wrong, it's common for sure. Most of those diagnosed have been lucky to have it diagnosed early through mammogram screenings, these days there are more women surviving to live on and become advocates to help their cause. That is AMAZING. THIS is what Ovarian Cancer victims need. they need more survivors, they need more awareness, more fundraising, it takes money to fund raise people and the statistics need to get out there to anyone and anyplace that can donate to help support events that raise money for OCRF. It's heartbreaking and it does not discriminate! Shannono died on November 9th, 2004 after just turning 25 years old with a four year marriage, celebrated that last anniversary in the hospital, two little bitty boys, and a bazillion people left devastated and shocked. This will happen again and again if we can't help find a way to have a definite and confirmative way to detect this. MRI's don't do it, ultrasounds don't do it...But there is something out there that can be discovered. We need everyone who has EVER been affected by this and their entire family to jump on board, we need all their friends to jump on board, and we need good people that just see this as a cause that really could use some help to jump on board and do something. If 20,000 would donate $5.00, that is $100,000.00!!!! Sounds like a lot of people? It's not. My city has more than one million people. Can everyone reading this get all your friends to donate five bucks? can 40 people out there collect $2500.00 each? Sure you can! Step up everyone, don't assume the few people within the organization are going to handle this. It takes more than a village, trust me. Ovarian Cancer Research Fund needs to recruit 50 villages..one from each state and each of those villages need to have sub-villages. STAND UP FOR OVARIAN CANCER! HELP US FIND A WAY TO GET EARLY DETECTION FOR EVERYONE. I couldn't stand to go through that again, as I still do, I can't stand to think of how many stories like mine have taken place because of this disease. I guess God needed another angel and she is definitely one he would want. We all love you Shannon and miss you everyday. Gina and your nephew Jordan.....

Photos

The Great!

I've personally experienced the results of this organization in...

By entering walk/run benefits. Collecting donations.

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2009

June 17, 2010

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June 17, 2010

Well, where do I begin. Almost 2 years ago I had to run to the emergency room (where I worked too) because I was in excutiating pain from my waist to my breast. It came out of nowhere and blindsided me. After an abundance of tests they found a mass on my left ovary and they found it was spilling fluid outside of my uterus, which they werent sure why, but must have been causing the massive pain. I was sent to Stanford Medical Center and from there they took me to surgery. Apparently the cyst on my left ovary had grown past the size of my uterus and began to spill fluid into my abdominal cavity. I had just had my last son only 2 years before and had a c-section. This had grown rapidly and with a vengince. If it hadnt been for the pain, who knows how long it would have gone on without being detected. I had a chemo port that was put in at the time of surgery, incase I was to have chemo. I was in the hospital for a week, and on the day that I was going home the doctors took out my chemo port because the pathology tests had come out good and only warranted watching. I cant tell you how scary this was for me and my whole family. I was already facing alot of issues at home and this was just one more obsticle. All I can remember worrying about the whole time was what about my kids. I was so upset at the emergency room they had to sedate me. My poor parents stayed with me the whole time and I could see the concern in their eyes, even though they wouldnt let on. I could see my dad try to fight the fear in his eyes. They are my rock. My older son looked after my two smaller sons till I got home and I will never forget the look in my 2 year old eyes as he saw me come through the door. His eyes lite up like a christmas tree, like he saw Santa. I was his gift. My boys were so brave and even though they were scared, they kept each other going. I didnt even know there was a foundation for ocrf until this happened to me. I was watching Regis and Kelly and she did a commercial for Electrolux and they were spreading the word and trying to collect moneys for ocrf. I also learned that there was a color and I never knew that either. I felt rather uninformed. So now I try when I can to let others know that it does exist and it needs to have more recognition. On the electrolux web site they had a email a virtual t-shirt to people to spread the word. So sence I was still recooperating, I sat at the computer and emailed one to everyone I had emails for. I try to keep myself informed and my dad keeps up on all the latest news too... in oct 2010 it will be my 2 year birthday, for being alive. It could have been much worse and I have to be thankful that research is going on so that others, like me, can go on living. OCRF is crutual for everyone... it needs to be recognized as a great cause. Way to go, if it werent for the doctors knowing more about it then they used to, then who knows where I would be today... Im just glad that my children wont have to worry where their mom is, because I am right here. (thank god).

The Great!

I've personally experienced the results of this organization in...

my own life. If it wasnt for you being there, who knows where I would be. Research is sooo important and others need to hear about it more, just like you hear about breast ca.

Ways to make it better...

If I had to make changes to this organization, I would...

Just that it be more world known. Not everyone knows there is a foundation or color or anything. It needs more publicity.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

learning more than I knew to start with.

The kinds of staff and volunteers that I met were...

I have only met on the internet.

If this organization had 10 million bucks, it could...

Do more research to help fight. It might also help out others in need when they are sick and not able to care/support their families.

Ways to make it better...

dont know yet

In my opinion, the biggest challenges facing this organization are...

Publicity, Publicity, Publicity. education to the public.... its the best way.

One thing I'd also say is that...

I love you, and I thank you for being there, even when I didnt know you.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2009

June 17, 2010

more

June 17, 2010

OCRF has made progress in finding a test for ovarian cancer. This is monumental! Most ovarian cancer is not found until it is in stage 3 or 4. The symptoms are vague and could come from a number of different things. An accurate test could make it easier to find ovarian cancer EARLY. This would make the survival rate increase dramatically. I will continue to donate to OCRF in memory of my daughter-in-law, Dawn Field, and in the hope that her daughters will never have to go through what she did. Marie Field

The Great!

I've personally experienced the results of this organization in...

I have read of their wonderful work in developing a test for early detection of ovarian cancer.

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

Tell your story here and help others understand this charity I think it is a great charity because right now, no one knows how this disease develops or how to stop it. They are trying to do this.

The Great!

I've personally experienced the results of this organization in...

just reading their material and learning from it.

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

As the daughter of a woman undergoing Ovarian Cancer treatment, it has been extremely helpful to be part of the OCRF community. Their e-newsletters contain informative articles about the research they are funding. It brings me peace of mind to know that there are researchers out there trying to make a difference in the fight against Ovarian Cancer.

The Great!

I've personally experienced the results of this organization in...

helping me cope with my mother's fight with Ovarian Cancer.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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