I need YOUR help!

OK guys, We need help!

There are two bills in Congress right now...

HR 653 - To amend title IV of the Public Health Service Act to create
a National Childhood Brain Tumor Prevention Network to provide grants
and coordinate research with respect to the causes of and risk factors
associated with childhood brain tumors, and for other purposes.

and

S 305 - A bill to amend title IV of the Public Health Service Act to
create a National Childhood Brain Tumor Prevention Network to provide
grants and coordinate research with respect to the causes of and risk
factors associated with childhood brain tumors, and for other
purposes.

Yes, you read that right, they are completely identical. The bills go hand in hand, but must be passed by the senate and house seperately before thay can be passed into law.

Lets get this done!

So what do you need to do?

#1. Contact your Congressional Representative and Senator in Washington D.C., representing your district, and ask them to support these bills and vote in favor of them.

You will need you full 9-digit zipcode, which can be found here

To find out who your Congressional House of Representatives Member and Senator are, visit this site.


#2. Contact your State Representative and State Senator (at your state Capitol) and ask them to file or support a joint resolution urging Congress to pass these bills. Remeber, you are asking for a "joint resolution".

OK, to find out who this is will be a little trickier. You will have to google "your state" general assembly. You may see a button that says "Who represents me?"

I have done the work for the top-five states that visit this blog. They are:

North Carolina

Vermont

Florida

New Jersey

Georgia

The best way to contact them is through e-mail. PLEASE, pretty please, and cherries on top, take a couple of minutes out of your day to do this.


Go ahead and take a look at the bills that we NEED to get passed:

House Bill 653

Senate Bill 305


#3. Ask your friends, family, helper network, medical professionals, church, community, school, teachers, and anyone else you can think of to do the same. You can copy and Paste this, and send it to everyone in your e-mail address books. The more noise, the better. In legislative affairs, it is very true that the squeaky wheel gets the grease, so to speak.

#4. If Congress passes these bills, and if your state passes a joint resolution, make sure to thank your Representatives and Senators.

To track it, you can go here

At the end of this post, I am going to include a couple of sample letters, the first is for your Congressional representatives in Washington, and the second is for your State representatives. They are just a little different. YOU DO NOT NEED TO USE THESE. But, you can if you want to, just make sure to add personal details.

Please customize your letter. Form letters that all say the same thing are extremely ineffective. But if you follow a general format, include personal testimony and clinical statistics, and “ask” for a specific action, your e-mail or faxed letter will be VERY, VERY impactful.

Hey YOU! Reading this right now, I am asking YOU to take action.





LETTER TO CONGRESSIONAL REPRESENTATIVE AND SENATOR
Your Name
Your Address
City, State, Zip

Today’s Date

Representative/Senator Jones
VIA E-MAIL/FAX (as applicable)

Dear Representative __________(last name) or
Dear Senator ________________(last name):

I am writing today to urge you to co-sign and pass companion bills HR 653 and S 305, which creates the “National Childhood Brain Tumor Prevention Network Act of 2009.” This vital legislation amends a portion of the Public Health Service Act and provides grants and coordinates research with respect to the causes and risk factors associated with childhood brain tumors.

As the proposed legislation cites, tumors kill more children than any other disease, and brain tumors are the second most common type of cancer in children. Childhood brain tumors are the leading cause of death from solid tumors in children. There are newly recognized types of brain tumors, as defined by the World Health Organization, and many of these newly recognized types occur in children. The causes of the overwhelming majority of childhood brain tumors are unknown. Brain tumors have substantial costs for affected children, the families of such children, and society. Childhood brain tumors cause significant morbidity and the loss of many years of potential life. The prognosis for most childhood brain tumors is dismal and survivors face lasting adverse health effects. Because of the relatively low overall incidence of childhood brain tumors, such tumors frequently do not receive sufficient attention and research funding.

No single institution has a sufficient number of patients to independently conduct research that will adequately address the causes of childhood brain tumors. There has been no comprehensive study analyzing all relevant clinical, biological, and epidemiological aspects of childhood brain tumors to identify potential risk factors and determine the cause of such tumors. Existing national cooperative clinical oncology groups primarily investigate treatment options and prognosis and do not typically examine the origins of childhood brain tumors or the risk factors associated with such tumors. A significant majority of children with brain tumors are first treated by neurosurgeons and not by oncologists typically involved in such groups.

[INSERT HERE, IN YOUR OWN WORDS, YOUR PERSONAL EXPERIENCE WITH A PEDIATRIC BRAIN TUMOR.]

Thank you for your leadership in the House (or Senate as applicable) and your consideration of this request. I would appreciate it if you would advise me of your actions on this extremely important and groundbreaking issue. My e-mail address is _________________. I look forward to hearing from you soon. (include your phone number if you wish.)

Sincerely,

your name
your address

LETTER TO STATE REPRESENTATIVE AND SENATOR

Your Name
Your Address
City, State, Zip

Today’s Date

Representative/Senator Jones
VIA E-MAIL/FAX (as applicable)

Dear Representative __________(last name) or
Dear Senator ________________(last name):

I am writing today to urge you to sponsor a joint resolution in the state assembly urging Congress to pass HR 653 and S 305, which creates the “National Childhood Brain Tumor Prevention Network Act of 2009.” This vital legislation amends a portion of the Public Health Service Act and provides grants and coordinates research with respect to the causes and risk factors associated with childhood brain tumors.

As the proposed legislation cites, tumors kill more children than any other disease, and brain tumors are the second most common type of cancer in children. Childhood brain tumors are the leading cause of death from solid tumors in children. There are newly recognized types of brain tumors, as defined by the World Health Organization, and many of these newly recognized types occur in children. The causes of the overwhelming majority of childhood brain tumors are unknown. Brain tumors have substantial costs for affected children, the families of such children, and society. Childhood brain tumors cause significant morbidity and the loss of many years of potential life. The prognosis for most childhood brain tumors is dismal and survivors face lasting adverse health effects. Because of the relatively low overall incidence of childhood brain tumors, such tumors frequently do not receive sufficient attention and research funding.

No single institution has a sufficient number of patients to independently conduct research that will adequately address the causes of childhood brain tumors. There has been no comprehensive study analyzing all relevant clinical, biological, and epidemiological aspects of childhood brain tumors to identify potential risk factors and determine the cause of such tumors. Existing national cooperative clinical oncology groups primarily investigate treatment options and prognosis and do not typically examine the origins of childhood brain tumors or the risk factors associated with such tumors. A significant majority of children with brain tumors are first treated by neurosurgeons and not by oncologists typically involved in such groups.

[INSERT HERE, IN YOUR OWN WORDS, YOUR PERSONAL EXPERIENCE WITH A PEDIATRIC BRAIN TUMOR.]

Thank you for your leadership in the House (or Senate as applicable) and your consideration of this request. I would appreciate it if you would advise me of your actions on this extremely important and groundbreaking issue. My e-mail address is _________________. I look forward to hearing from you soon. (Include your phone number if you wish.)

Sincerely,

your name
your address

Perks of a Mega-Family

I am a Dunkin Donuts girl. I was, after all raised in Vermont. However, where I am now located, is Krispy Kreme country. I have not ever been to the actual Krispy Kreme shop though. Mainly because you can often find these Krispy Kreme fundraisers all over the place. T-Ball, cheer-leaders, parks&rec., schools, there they are, groups of kids, in the street, selling donuts. You don't even get out of your car. They just walk up to the window, and the deal goes down.

Today I ventured into the Krispy Kreme shop. They have the best program in the world, and after today, I am now a Krispy Kreme fan. Why oh why did I wait so long to take advantage of this incredible offer? We always get these little pamphlets on report card day saying to stop into Krispy Kreme for a donut for every "A", up to six. Well, I have never taken the kids over to Krispy Kreme, because we have seven kids, so what good would six donuts do us?

Today was different. Today, I had my kids, as well as my brother and his step-daughter, who goes to the same school as my elementary kids, with me. And we decided to check out the Krispy Kreme incentive. A donut for each "A" up to six was true. The part I misunderstood? Low and Behold! Up to six PER KID! 32 donuts later, we left Krispy Kreme, without a penny out of pocket. Yes, that was THIRTY-TWO donuts.

My brother and I also came to a new realization about all of those Krispy Kreme fundraiser's. We now know where they get all those donuts they are selling. We know your game coaches. We know you do those kids' homework to make sure they all get A's for your fundraisers. I feel bad for the poor kid who gets a B+. He gets thrown off the team doesn't he? Who cares if he's the pitcher? He needs to bring home the donuts!

GKTW: Day 4, Part 2 (Rest schmest. Who needs it?)

We got back to the village in time for dinner in the Gingerbread House. It was fantastic of-course. Although our plan was to go back to the villa to relax, we were told that tonight's village activity was a life-size candyland game in which the kids are the characters at Matthew's Boundless Playground. This playground was aptly named "boundless", for it's wheelchair accessibility. A playground with a candyland theme, built of accesible ramps is a sight to behold. Because our picture's were taken at night, we were unable to capture the magic of this place.

The older kids asked to spend some time in the gamerooms, and we figured that they needed a break from the parents, so we took the younger boys over to be pawns in the game. We were told later that the older ones had an amazing time.

Over at the playground, the boys were paired with an incredible volunteer, a college student, who told us that this was where she chose to spend all of her Sunday evenings. She had GIANT candy-land cards, with colored squares of single or double, just like the real game. The boys took turns pulling a card, and then they had to go to whatever the card said, by way of whatever the volunteer came up with. Because our boys are physically able, the transportation methods involved dancing, crawling, spinning, crab-walking, etc. They had an amazing time! When they got through the game, in true kid-heaven form, they were rewarded with handfulls of candy, and snow-cones.







After the life-sized candyland game, It was time for a new game, make a life-sized candy cane! The boys were paired with Miss Merry, and another great volunteer, and they proceeded to turn Miss Merry into a candy-cane.



Wrapping Miss Merry in red & white streamers turned her into a candy-cane




Being asked by the emcee "What kind of candy-cane" they turned Miss Merry into.
"Peppermint" duh. Also they were asked if they planned on turning their parents into candy-canes when they got home. Their answer "If they let us".



There were more games (and a dance party) at Matthew's Boundless Playground that night, but we decided it was time to go check on the other kids over at the gamerooms in Amberville. We found them, and since our night of relaxation was not happening, we decided to use the pillow-coupons we had received, and make Andrew's star in the castle of miracles. First though, another ice-cream trip to the ice-cream palace.

The thing that I thought was so cool about the pillow-making, besides the machine itself, and the fact that it spit out un-duplicated, unique pillows for all the kids, were our voluteers that night. We were assisted by a young girl, and her mother. I know that at home, our kids' volunteer opportunities are limited by their age, and I am so greatful to GKTW for allowing people of ALL ages the chance to volunteer. I wish we were closer, so that our kids could volunteer there. It is definately something that will happen though. All of them have mentioned it to me.



Bubbles are cool




They have to turn the knobs and push the buttons to make the perfect pillow. The buttons say things like 'dreams' and 'wishes'.




Can you see the feathers that didn't make it into the pillows? They say Rejects. lol.





Did I mention bubbles are cool? Even Andrew thinks so.






Andrew makes his star.

The ceiling is covered with them, and it was sobering to realize that Andrew's trip was forever memorialized in that moment. For the rest of our lives, we have the opportunity to visit his star there in the Castle of Miracles. It is his, and I pray that he will have the chance to visit it.

When he was done, he had to put it into a box, and the 'Star Fairy' came and took it. The next day, we received the coordinates for his star, pinpointing exactly where it was located. The Star Fairy had put it up overnight!




We went back to the villa, tired, content, excited about what tomorrow may bring, sad that we had reached the half-way point of our trip.

Give Kids The World - Day 4

Day 4 (Sunday) started like so many others, a hearty breakfast in the Gingerbread House, followed by a ride on the Merry-Go-Round.

Rick sitting under a mushroom. I know I keep saying this, but every little detail at GKTW is just so amazing.




Never assume your kids are too old to ride. They may be bigger than me, but here in kid heaven, fun was equally had by the 6 yr-olds and the 14 yr-olds.





During orientation, on day 1, I was given a priceless tip by the lovely woman who orientated me. The tip was this: If you can, save the Disney parks for after the weekend, maybe the holiday crowds will go home.

So that is what we did. But, we only had 3 days left, and 4 Disney parks, and even though it was Sunday (still the weekend) we had to start the whole Disney thing. Our plan was to hit Disney's Animal Kingdom and Epcot in one day.




The first thing we saw when we walked in was this amazing 'Tree of Life' these pictures don't show the magnificent size of this tree, or the intricately carved animals all around the trunk.




Onto "It's tough to be a bug" Most of us loved this show. Another 4-D one. Not Andrew's favorite.



The main thing that we wanted to do at Animal Kingdom was the Safari, and it didn't disappoint. We saw all kinds of animals, including lions. I wont be posting all of the pictures taken by all of us of the animals. I will though, post the pictures of us on the safari.



Do people still use this stuff?




Alright, one pic of the animals we saw:






At some point, I realized that Kyley was upset that her phone was not taking great pictures.



Really upset. I gave her the camera, made her the official photographer, and she got very happy.



After the Safari, We headed to Asia. Disney does such an amazing job with decoration and architecture, and Animal Kingdom is no exception. It was amazing.



Kali River Rapids! So it was hot, and we were ready to get wet. Up to this point, on every water ride we had been on, somehow Rick had avoided get wet. We would get off of rides and all be soaking, dripping, and he would have one spot on his shirt. This is what he was bragging about before he went on this ride, and continued to be the one plummeted with water, over and over again.



And then the absolute funniest part of the trip, When we all got our stuff out of the "dry storage" after the ride, Rick couldn't find his shoes. They were gone. And then he saw them. Sitting next to him on the ride, not in dry storage at all. He literally had to dump the water out of them that had completely filled both shoes. Priceless!

Drumroll please....

Expedition Everest!






Definately one of the highlights of the whole trip. Many of the kids' favorite ride. Very cool. We rode this one 3 times! The scariest thing happened here though, Kyley left her little back-pack on the ride. Fortunately, we got it back, from lost and found. With her phone and all her money still there!

From here, we headed over to DinoLand, to find the dinosaur ride. So we're in the back row in this pic, but look at the guy in the front row. Definately more scared than any of my kids.



We found ourselves back at the beginning of the park. Yeah, we missed A LOT of Animal Kingdom, but we had a 3-day park-hopper pass, and 4 parks to do. I am incredibly thankful for this book:



It was given to us by Make-A-Wish at our send-off dinner, and I read it cover to cover. I was able to go through, and make a list of all the things we HAD to do. This way, when we actually got to the park, depending on how much time we had, we could focus on the stuff I thought our family would really enjoy. So because we wanted to get to Epcot, we left Animal Kingdom for good. We loved it there, and I wish we had more time.

Off to Epcot!!!



These next 2 amazing pics were taken by Rainia, I love her eye for architecture!




First thing we HAD to do was a ride called Soarin, all of us wanted to watch it since seeing the video that Make-A-Wish had given us. It was a parasailing simulator. It gave the feeling and illusion that we were parasailing over California. Everybody loved it.



From there, we headed to "The Seas". This is where we had to have "the talk". For the first time of the whole entire trip, one of our kids started to get cranky. It was bound to happen, and I knew it was just a matter of time. We had been running non-stop, and we were tired. So the actual crankiness, involved rides vs. shows. So "the talk" actually centered around the difference between Disney and Universal. Thank goodness had had been to Disney a couple times as a kid, and knew what Disney was all about.

I had to explain that while Universal Studios and Islands of Adventure were about thrills, and rides, Disney was about a feeling. Instead of a 60-second thrill ride that makes you feel adreneline like we experienced at Universal, Disney was about the feeling you have the whole time you're there. It's sights, and smells, and sounds, it envelopes you. So there were going to be a lot more show type experiences, and a lot less adreneline type rides. "The talk" helped a lot. The kids seemed to have a shift in how they experienced the rest of the trip.

So back to "the seas". This is where we experienced one of the highlights, Turtle Talk With Crush. This was actually a show, with a movie-theater sized screen of an underwater scene. In it was Dori from Nemo, but mainly Crush. So Crush talks to you. I mean REALLY talks to you. Now remember, he is completely animated, inside a movie, and talking to the audience. Happily, one of the people he chose to have a conversation with was "Andrew Dude". Now if you have seen the movie, and know who crush is, you know exactly what I'm talking about. Anyway, Crush and Andrew carried on a rather long conversation, and Andrew talked about it for the rest of the trip. I am so glad that he got singled out.



OK, Journey into Imagination. Hhhhmmmm.... 'Nuff said. The "Image Works" part was cool, if we had time to explore. It was very similar to a science musuem, in that you do a lot of hands-on type stuff.

At this point, ALL of our kids were getting cranky. (And so was I.) I can't believe that they went FOUR days before it happened. We were hungry, and after a quick snack, we decided that instead of trying to get the rest of Epcot done today, we would go back to the village and come back tomorrow. It was a unanimous decision, and the plan was go back to the villa and RELAX!!!

One more thing in 4-D before we left, Honey I shrunk the audience.



Coming soon...Day 4 Part 2 titled "So much for relaxation"