Thursday, June 4, 2009

National Childhood Brain Tumor Prevention Network Act of 2009

National Childhood Brain Tumor Prevention Network Act of 2009:

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.

current 111st session of congress

http://www.opencongress.org/bill/1/111-h653/show

Although the email pasted below is long, it is a worthy read. You can help! If you feel led to do so, please contact your congressmen/women and ask them to support this bill. If anyone would like contact information for Lloyd Morgan, please send an email request to the Bradburn family email address listed under the subscribe section.

April
(A huge thank you to my friend Matt for bringing this to our attention! You are awesome!)

Dear Friends,
Senator Kennedy's "Cancer Bill" S 717 is coming up for a vote. It may not address low grade or the causes of pediatric brain tumors. Please contact Lloyd Morgan for more info on HR 653 the National Childhood Brain Tumor Prevention Act of 2009

Samantha Scolamiero, founder and director (18 year survivor)
We Moved! Please update your records.

The Healing Exchange BRAIN TRUST www.braintrust.org
490 Broadway, Suite 4
Somerville, MA 02145
ph: 617-623-0066 * toll free: 877-252-8480 * fax: 617-623-0086

FORWARDED MESSAGES from May 26, 2009:

Dear Loice,


Your comments and thought are of great importance. Please see my responses within your post below.
Best regards,
Lloyd

IF WE DON'T LOOK, WE CANNOT FIND
Lloyd Morgan
Chief CheerleaderNational Childhood Brain Tumor Prevention Network Act of 2009
(Senate Bill S 305, House of Representatives Bill HR 653)

Lloyd,


Well, it looks like Senator Kennedy's big, huge cancer bill is making its way to markup. From what I have been told this is supposed to go straight to the floor and probably presented by Senator Kennedy sometime in the next two weeks or so.

I remember when we first heard about this in Senator Enzi's office and how much emphasis they put on it the the HELP Chair was really focusing on that. It was clear even at the time of our visit to Senator Enzi's office that S 717 had a lot of support and would come to the floor of the Senate in short order.

As a strategy I would see this as a good time to contact the Senators to make again put in a word for pediatric cancer- especially pediatric brain tumors- since it looks like they will likely vote soon on this. Congress is in recess this week, but will be back in session next week. I strongly agree that this is an important time to contact our Senators about the Senate Bill, S 305 and our Representatives about the House of Representatives Bill, HR 653 (an equivalent Bill to S 717 is in the House of Representatives). S 717 does not address childhood brain tumors and dose not address investigations into the cause of tumors and thus does not address our issues. However, it does bring awareness to cancer in general. We need more co-sponsors and our team has been working hard to achieve this. We have significant momentum and our team will continue to build the momentum. Those of you who are copied on this email should re-invigorate your efforts to get your Senators and Representative to co-sponsor our Bill. I cannot emphasize the important of your repeated (polite persistant) phone calls asking them to co-sponsor our Bill.

One of the great advantages I saw of the CBTPN Act was to try to create a framework for advocacy. It is still going to be awhile before we either can get this on the agenda in the Senate perhaps thos would be a good time to gain more experience at a grassroots level in childhood braintumors to connect with our representatives in DC. If we continue to build the momentum we have, I believe we can bring S 305 and HR 653 to a hearing process in the Senate and in the House in the reasonably near future. Once this is achieved we are well on our way to passable of the National Childhood Brain Tumor Prevention Network Act of 2009.

In addition, it might be a way of drawing the pediatric brain tumor community together to make sure the entire communities issues are addressed. Agreed! This effort is drawing both the pediatric and the adult brain tumor community together.

I have heard concerns in the low grade community about the wording of cancer and perhaps they could be excluded from funding. This is the same concern that I heard about this bill. Perhaps building a relationship to advocate for all pediatric brain tumors- both low and high grade- be included might engender greater interest/trust in working on this bill. It is a misnomer to think of our Bill as a cancer Bill. It is a childhood brain tumor bill! I rail against the concept of low-grade and "benign" brain tumors. These tumors are all malevolent. Our Bill, because it will investigate all childhood brain tumors over a 5 year period, will be proportional to the relative incidence of the various childhood brain tumors. Pilocytic astrocytoma, a so-called low-grade brain tumor, is the most common childhood brain tumor, so it will have the largest number of cases. But even DIPG tumors, a relatively rare childhood brain tumor, and arguably the worst of the worst, will have sufficient number of cases to have a strong likelihood of finding a cause.

In addition, medulloblastoma community, the survival is more than 50% at 5 years however can have multiple and severe late effects. These late effects were listed as a reason for the bill-8) Two-thirds of childhood cancer survivors are likely to experience at least one late effect from treatment and one-fourth are expected to experience a late effect that is life threatening.

To me it looks like this bill is going to go to the floor for a vote and we can have a voice or stay silent. Perhaps it isn't what is needed in the community but then we still can have our concerns heard by our Senators. S 717 and its equivalent Bill in the House of Representative will be coming to the floor for a vote soon. If asked, we should say that we support S 717, but also need S 305 because S 717 does not mandate investigation into the causes of tumors. Now, as you note, is a particularly good time because of the attention that S 717 brings to tumors.

I'd be interested in your thoughts.
Loice

1 comment:

Maryse said...

I didn't read your long post because I'm french and I'm not sure to understand!!!
I just wanted to let you know that my own son is ill.He has a very uncommon genetical illness.I know what you are living.Your are in my thoughts and your son is in my heart.Tell him that someone went here "from France" to say hello :)