After my mother died of a rare and deadly form of ovarian cancer in September 2010, I searched the Internet for charities that support ovarian cancer research. That's how I learned about OCRF. I work at a small nonprofit in Florida that has earned Charity Navigator's four-star rating for the past seven years. The OCRF also has the CN four-star rating, so I know that most of the funds donated to the OCRF go toward programs and research. Right after my mother's death, I was able to speak briefly with the CEO (who attended the University of South Florida) and the chief research officer, about my mom and the work that the OCRF was doing. I feel my donations matter.
Review from CharityNavigator
This charity is near and dear to me after my fight with ovarian cancer. They have had numerous beneficial articles on their website and have been assisting me in organizing a walk a thon this September. I was 24 when I was diagnosed and it just about devastated me. Thanks to OCRF for being there to help guide me on my way.
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.
My wife passed away from Ovarian Cancer in 2002. It amazed me to find out that there were no funds that would help speed up research in this area. Ovarian Cancer is treatable if diagnosed early but most times this illness is not diagnosed on time. I was relief when after years of looking for a fund I found OCRF. They are carrying the torch for all of us.
I first learned about OCRF through my sister, who is now a member of the executive committee of its junior board. Our mother passed away from ovarian cancer in March 2007 and we both learned through the experience how little was known about the disease since she was misdiagnosed several times. I am now dedicated to OCRF's cause and think that it's great that there is an organization focused specifically on raising awareness of the disease. I give annually and also participated in OCRF's first annual TEAL Walk last year.
I became intrigued about OCRF when I saw an advertisement for their all-womens triathlon series. I was in chemotherapy at the time and the ad provided the incentive I needed to get through my chemo and get back into shape. A year later I competed in the entire series. However, during that year, I researched OCRF and learned about the mission and the work they are doing. I was incredibly impressed. So much effort, time and energy goes to finding a method of early detection. Equally amazing is how few people work for OCRF. This very small group of dedicated employees is responsible for some of the largest medical fundraising in the country. What OCRF is doing is saving lives, sometimes at a grass roots level, sometimes on a bigger scale. Sure the cure for cancer would be nice but this feels more immediate, more important and more closely obtainable. If ovarian cancer is detected early, it is 94% curable. OCRF is working towards that goal.
Ovarian cancer unnecessarily takes so many women in the prime of their lives. If caught early, 95% cure rate. Ovarian Cancer Research Fund is working on early detection and treatments so women like me can survive a diagnosis or even prevent getting this disease.
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.....
I am an Ovarian Cancer Survivor. I wanted to find an great charity to work with that wanted to find a cure and an early diagnostic test for this insidious disease. They are an amazing group to work with. Talented, efficient, cooperative, dedicated, and compassionate. They fund great research projects with the help of great doctors to determine the value of the research suggested. I highly recommend this charity.
I searched for an organization that was geared towards getting the word out about ovarian cancer and at the same time funding research to cure this horrible disease. I came across OCRF and from their affiliations and fund raising events I imagined them to be a large cumbersome organization. When I called to inquire about having a fund raiser and funneling the funds to a particular person via their charity I was delighted to discover the charity is run by 5 people. So the overhead is small and the ability to donate more money is tantamount to their success in my book. I wish their events were on the weekends more often. My job is a demanding one and I can not attend all the week day events. But the fact that this charity has them and so many famous companies and people are coming on board shows me that this is a dynamic driven unit. I have spoken to a few of the staff members and they are all so kind and patient. I lost a beloved friend and family member to this disease and its so frustrating to know that its not a popular cancer. Breast cancer support seems to be all the rage. I want the same for ovarian and I believe OCRF is the organization that accomplish that. Because of Kelly Ripa and Electrolux I have sent out hundreds of cakes which then allowed the people I sent them to to start sending their own and becoming aware of this disease on a more personal level. Once someone gets involved in something, even something as small as sending a cake, it makes them feel good and stays in their minds. Now more people are aware of this disease. And that's the first step to finding a cure. That OCRF managed to get Oprah Winfrey to walk in their even on Mother's Day was a real boast. My only issue with that was it was Mother's Day, and this is a woman's disease, I think it should have been on Father's Day. I didn't attend because I wanted to see my friend who was also a mother for that day. She passed away a week later. The timing could have been better on the walk. But other than that, this is the charity I promote and support. I wish I could do more to help. I certainly let everyone know about them and forward all their email notifications to my address book. This is the one that is going to fund the research that finds the cure that ends this horrible disease..because they work every day and every way to that end.