Friday, April 13, 2012

Why Curesearch?

Why Curesearch? I think that is a fair question for most. Most people have never heard of Curesearch. We had no idea about it until Briley was diagnosed. We were like most, we donated money and a bounce house every year to the Relay for Life teams and felt good about doing so. We also donated money to a breast cancer group that would call the house every so often looking for money. We felt good about doing that also.
After Briley was diagnosed, we are determined to do more to donate and raise money towards cancer research. That's when I heard of Curesearch, but I played it off at first since it would be easy and fun to put together a Relay team for the American Cancer Society and work with friends and family to raise money for research.
Then I heard a statistic, only .04% of my hard earned donations to the American Cancer Society would go towards pediatric cancer research. I was shocked, but I had to verify this statistic. It was right. I also looked into the breast cancer group that we were sending money to and found out that only 24% of the money we donated went towards it's intended purpose that they advertised. I was fuming.
Now, I research every organization out there before I donate. Most people would be shocked if they knew where their money is going with certain organization.
I have come to realize that the American Cancer Society (ACS) is not a primary funder of pedi cancer. And that's fine. I've read many stories of other families of cancer kids raising a ton of money for the ACS and only so little goes back to kid cancer research. It's kinda like donation money to the Susan G. Komen foundation for prostrate cancer funding. It's not going to happen.
I guess my purpose of this article is to raise awareness of where your money is going. There are many organizations out there that will direct your money to the specific type of research or program where you want your money spent. If you want to give your money to breast cancer research, then Susan G. Komen should be looked at. Also, there are many other good breast cancer foundations out there that also need the funding and may better suit your interest. And there are many that may only donate 10% of what you give and pocket the rest. Just a little research on your part goes a long ways. Let's not give to only the foundations that we are familiar with because they have the money to advertise.
I recently learned of The "V" Foundation. They fund all types of cancer research. Most importantly, 100% goes directly to research. That's big.
In comparison, the ACS only donates 16% to research. But, the ACS does offer many programs on education and financial aide for traveling expenses to and from treatment. However, a little more than a quarter of the ACS expenses are spent on salaries and overhead. This means, if I raise $100 dollars for the ACS, about $28 of that will be spent to pay salary and overhead. $15 to research. $.04 (4 cents) to pedi cancer. The rest goes to programs & education. I don't dispute that there should be same salaries paid and some overhead, but for me, that is to much money going towards things other than research. If you are ok with that, then that's ok with me.
We are doing Curesearch because we know that the money that we raised is going where we want it to. 94% of the monies will be used for patient education and for research. To break it down even further, something like 85% will go straight to research. And trust me, patient education is a good thing also. This is big! I can promise you that we wouldn't be involved in doing the walk if the percentage of funds going towards research wasn't so high!
We all want a cure for cancer, both in the adult and kid world. That would be awesome! However, the reality is, we really want better treatments with less side effects. These cancer kids get so much chemo that it is likely that they will developed late effects from the chemo later in life. Only one new drug has been developed in the past 26 years for pediatric cancer. Overall, only 3% of the funding in the US goes towards pediatric cancer research. There is not a market for pharmaceutical companies to spend much time developing new pedi cancer drugs.
This is why it is important to continue to fight for the kids and families affected by cancer. Please know that I'm not advocating taking money away from any other research, but I feel that it can be distributed better.
I will be on the TV3 news at noon next Tuesday, the 17th, talking about the Curesearch walk. We are also give the luminary speech at the Relay for Life walk next friday. Does that surprise you? Let me tell you, the relay committee knows how we feel about the ACS and we were still asked. Let's just say that I was very humbled. The speech is not about raising money for ACS or Curesearch or for whoever, it's about Briley and how this community came together for our little girl. I really can't think of a better stage to tell Briley's story than in front of Seymour folk that will come together for one night for one common cause. I can most certainly set aside my differences for that little bit and share our story with the town that fell in love with our daughter. And I hope that some of the folks will decided to join our team for the Curesearch walk in September.
The Curesearch website is www.curesearchwalk.org
If you donate to any organization and would like to check out how your money is spent, go to www.charitynavigator.org
www.charitywarch.org
Before making that next donation, go to these site. Especially if they call you on the phone and ask for money. Don't feel pressured to give. Ask for information through the mail. That will give you time to check them out.
We has a disable veteran group from florida call us wanting money. I nearly did, but asked them to send me info through the mail. A few days later, I got the donation form in the mail. Got online and looked them up. What do you know, they were red flagged! It was a scam! Like I said, know where your money is going!
Cancer has been terrible in my family the past couple of 2-3 years and I know first hand the effects it has on our family. I would like to start up a cancer support group in Seymour. We could do things as provide meals, travel, money, and such. We can also donate a portion to independent cancer researchers. But can this happen? Can we raise money for our local people and do away with raising money for other organizations that does what it pleases with the money. A lot of good could be done for local people that need the help. We know this first hand when everyone came together for us. Is it possible?

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Thank you for your thoughts & prayers for Briley! God Bless!