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What I want to do

Help raise funds for Ovarian Cancer Research

What matters to me

My kids and family are always first, as they've gotten older I wanted to use my time volunteering to help groups and organizations that have effected me and my family. I want people out there suffering from health issues to have resources and support. Teaching my kids that giving IS receiving. Worried about the selfishness in the world these days, everyone that cares needs to stand up and speak, act, and make aware to everyone. Good examples should be set by demonstrating good acts to others.

What inspires me

Meeting people that have different stories and lives completely different than mine. Hearing stories of recovery, any miracle that someone has experienced.

Fishers, IN USA

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FIBROMYALGIA ASSOCIATION
June 18, 2010

My name is Gina and I have suffered from Fibromyalgia for about five years and not diagnosed until 15 months ago. I actually had several people suggest this before diagnosis and I hadn't heard of it before then. I'm just glad to find so many organizations out there however on this site there are no reviews, participants, patients, or fundraisers out there for this terrible syndrome. They say there is no cure, there is no result in death either, BUT it's miserable and really effects your life and the people in it as well. I continue to work daily now that I'm on pain management medicine. The dosage has gone up 3 times since I've started on it, strong pain meds to help me through the day on bad days, and sleeping meds at night so I can sleep! It's non-stop pill popping and it wears you down.! I really thought for two years I was losing my mind because every week and sometimes day to day my horrid pain was in a different spot! I just got to the point I was in tears all the time! Missing work for 3 days at times in the winter because it felt like the flu, strept throat, and like I had been in a wreck two days before that threw me across the street but yet NO FEVER! There must be something out there that can help stop this madness for us. I do exercise a lot and it helps keep me feeing good. Basically fighting it all the time. However, I always exercised daily anyway and have been a dance instructor for 25 years! but meds and exercise don't make it go away....it helps keep it under control. Every six weeks or so, I'm toast. Out of control unable to function PERIOD. Does anyone out there have luck with certain things or a certain drug?

The Great!

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

I have not.

More feedback

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

MY ROLE:
Volunteer & I've not worked with this organizaton.

Ovarian Cancer Research Fund, Inc.
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.....

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The Great!

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

By entering walk/run benefits. Collecting donations.

More feedback

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2009

MY ROLE:
General Member of the Public & volunteering for fundraising events in Indiana.