Still here and trying to catch up :)

So I know I was gone for a long time and I can promise you it was not because there were no news but because we were very busy :)

The best news of all is that last night at midnight ET the Voting for the Pepsi Refresh Grant ended and CureJM was in 1st place and won a $250,000.00 Grant for Research!!!

This was amazing in so many ways because as you know JDM is not very well known and the only ones that truly understand what this disease means are those Children affected by it, their families and friends. So all of the Voting was done by word or mouth and asking friends through e-mail and Facebook to Vote. It was so breathtaking how much power a relative small group of people have when you consider we were competing against much more well known causes.

I do want to add that there were very worthy causes we were competing against and I so wish we could all have walked away with a win. When it comes to saving children's life's there should not be a competition but only compassion. No child should ever die for any reason!

I saw a post today on Facebook from Hope's Mom and here are some facts on what the Grants are that are given out to help research in certain fields:

According to a September 12, 2008 article by Helen Jonsen, Forbes.com
senior editor, the funding for pediatric cancer clinical trials has gone
down every year since 2003, and is currently $26.4 million. By
comparison, NCI funding for AIDS research was $254 million in 2006;
funding for breast cancer topped $584 million the same year.

Now I know this is from 2008 and it involves cancer BUT still is it not shocking to you that the research money for pediatric cancer is so small compared to Aids or Breastcancer? I am NOT saying they don't matter but in my opinion where is here any comparison???

CureJM of course can only dream of getting any six figure grants but that is beside the point. I tell you that if I had the choice I would gladly trade my life for that of my children. I say gladly because I feel that I at my age had a shot at life. Would I rather live? YES! but not if it meant me instead of my children.

So as you see I am coming back to my blog very confrontational but I am tired at times that children truly have no voice when it comes to how money is handled for Research. What Pepsi is doing is wonderful but truly there should be no competing for money!

On another note, we got through another Methrotrexate Injection last Thursday, Connor got great feedback from all three Therapist, PT, OT and Speech. He is sore from PT and is telling us today that his legs are hurting. He got a new Therapist if you remember and we think she is very nice but I am wondering if she is pushing to hard?

Tomorrow we are heading back to TCH for Connor's IVIG and we are hoping for some great blood work so that we can stay on a once a month schedule!

My sister and her husband are touring some National Parks right now and we had a very fun week with them before they headed out. We got to see the Great National Sand Dunes again, plus a most magical stay at the Movie Manor which is a Motel build around a Drive-In Movie Theater. The show 2 movies each night and you can watch it right from your room laying on your bed. Each room has a speaker system and the boys plus as Adults LOVED it.

We then got to see Bishops Castle again plus the Royal Gorge. It was a very relaxing and fun two day trip for all of us.

THANK YOU to all of you that Voted so consistently all month and the huge support we got last night was just breathtaking!!!

Hope you have a good week!

Hugs,

R A C A