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Shave for the Brave from SocialStudiesDC.

Our Current Strategy

STRATEGY #51

The Creating Hope Act

Do you have two minutes to spare?

On Thursday, Sept. 22, 2011, the 46 Mommas took a very important message to Capitol Hill and also lent their support for the Creating Hope Act. The Creating Hope Act provides market incentives for drug development for kids with cancer. It is championed by Kids v Cancer, a non-profit founded by Nancy Goodman, a mother who lost her child to cancer.

Now that the bill has been introduced, we need your help! Pease help us help the childhood cancer community! It only takes a couple of minutes, and you can make a difference!

Let your representatives in Congress know that you support this bill, and you would like them to, as well!

If you follow this link, you will be taken through a very simple process. All you need to do is enter your information, and the system will find your representatives and add them to the recipient list. A pre-written message will be provided, and all you need to do is enter your own personal story about what this bill means to you.

Click here to lend your voice today!

More about the Creating Hope Act

The Creating Hope Act is bipartisan legislation that builds on the FDA Amendments Act of 2007, which originally established a voucher for drug development for neglected tropical diseases.

When introducing the legislation, Casey said: “Millions of Americans are affected by rare diseases and neglected conditions for which there is currently no hope because there is no treatment. The Creating Hope Act provides an incentive, at no cost to taxpayers, to develop treatments for these illnesses. The broad support for this legislation speaks to the need to solve this problem.”

The priority review voucher program would award a voucher to a company that gains FDA approval for a new drug application designed for a rare pediatric disease. To be eligible for a priority review voucher, the new drug application for the rare pediatric disease must be:

  • Eligible for priority review by the FDA;
  • A new drug that has not been previously approved by the FDA;
  • For a pediatric indication; and
  • For a disease that has received Orphan Disease Act designation.

The Orphan Drug Act was lobbied for by National Organization for Rare Disorders (NORD) and provides incentives for researching and developing treatments for rare or “orphan” diseases. The Creating Hope Act defines orphan diseases similarly to the Orphan Disease Act, in that the disease should affect fewer than 200,000 people. The numbers necessary to be considered a rare disease vary from region to region, but a disease with an incidence of one of 1,500 to 2,500 is typically deemed an orphan disease.

Read more.

Previous Strategies


Does your state have a Childhood Cancer Awareness license plate?

Are you looking for a project that can have an impact?  Does your State have a License Plate Awareness program?

If not, why not start a movement in your state?!  Please contact your state’s DMV/BMV. If a childhood cancer awareness plate is not currently in place, ask for the guidelines required by the state to for having a specialty license plate manufactured and then make it happen!

A number of states already have Childhood Cancer Awareness plates.  Please email Dianne@teamunite.net with details on your state’s program and we’ll be sure to start a list and post it on www.teamunite.net.  


URGENT!1. Please continue the on-going campaign to call, write, email, fax and visit as many people as possible. Please continue submitting stories to local and national media and continue reaching out to the celebrity community. 

Facebook2. If you have not done so already, please join us on Facebook and get others to do this as well. Post your pictures and videos and feel free to post information about fundraisers you are supporting or any news in your local market relating to the childhood cancer community. This enables us to post news in a more timely fashion as well, so please be sure to post any breaking news or information that you’d like to share with our Facebook community. Please also contribute to our information bank through our Team Unite Message Board/Forum. This area of our site where individuals can post prayer requests or resources and information that has been helpful to them on their journey.


Be The Match

Thousands of patients hope for a bone marrow donor
who can make their life-saving transplant possible.

They depend on people like you.

You have the power to save a life.  Take the first step today.

Click here for more information.

 
Media Outlets

The following are links for a few media outlets you may contact.  Please send to any you feel would benefit our cause in raising awareness. 

Contact your local ABC Affiliate station
Contact your local Fox Affiliate station
Contact your local NBC Affiliate station
Contact your local CBS Affiliate station
CBS email Form      |     ABC email Form     |     NBC Contact Form
Ellen     |     Oprah     |     CNN

Local and national TV stations, newspapers, magazines, etc. Of course we need ongoing letters to editors, etc and also please keep your eye out for articles and when they appear be sure to post and thank the publication or news channel for reporting on childhood cancer!

Action Items

!Your Autograph Wanted!!!

Please sign these petitions in support of Childhood Cancer Awareness!

Please take a moment to sign the "CHILDHOOD CANCER AWARENESS POSTAGE STAMP" petition here.

Please take a moment to sign Team AJ’s petition as well.  It can be found here.

 

!Celebrity Contacts

The attached table is a listing of celebrities affected by childhood cancer. This document is a work-in-progress by Team Unite. We are hoping to build upon this list, to include more details and contact information. We'd like to reach out to these individuals and ask that they help us in our efforts to get the word out. If you have contact information for any of these folks or know someone we should add, please email dianne@teamunite.net.  Thank you!

 

!Year-Round SEPTEMBER!

Please continue to wear your Childhood Cancer Awareness Gear!  A gold ribbon is a must and is easy to make.  Or you can order buttons, t-shirts and more at www.cafepress.com/teamunite. Let’s all start now in asking children’s hospitals in our area what they are planning to do for Childhood Cancer Awareness Month!

 

!Angel Wings

Are you aware of the Angel Wings ministry?  This is a group of prayer warriors. To find out how you can help join a wonderful group of people who are sending prayers both individually and as a group to folks battling childhood cancer please visit their site at http://groups.yahoo.com/group/Angel_Wings/ . The idea is to adopt a child who is fighting life threatening illness and follow their journey.  You send special prayer requests to the group on their behalf and join together on a regular basis and hold prayer vigils for all of the families they pray for.  We realize that prayers alone are not enough to stop this dreadful beast but the positive impact that prayer can have is undeniable so please, if you have the time and are looking for a calling, please consider helping these folks out and include a family in your daily prayers. 

 

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