Saturday, January 31, 2009

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

5 comments:

Stacy said...

I'm a May 2009 knottie, and I've been following your blog regularly since you posted there about it. I love reading about your faily, and I am so moved by the love you, Rick, and the children have for one another. I always keep you all, especially Andrew, in my thoughts. I most certainly will write to support these bills.

doodlebelle said...

Stacy! Of Course I know who you are! I am so happy you are still reading my blog. Very cool. Are you still on TK? I am expecting to return to TK soon, It's getting close to crunch time on the wedding planning. Also, we should be getting high-speed internet at work THIS WEEK! YAY!

Kristine said...

I am all over this! Will forward this on as well. Love that you put in the link to track the bill, didn't know you could do that.

Kristine said...

PS, I responed to the name question you asked on my blog, long story short, first name is Kristine.

Kristine said...

Ack, I just came back to copy the letters. Could you email them to me? Thanks.