Tuesday, April 12, 2011

Creating Hope Act

There is another bill in Congress that is designed to provide incentives for companies to develop better treatment for rare pediatric diseases such as cancer.  The Creating Hope Act of 2011 (S.606) is described here by the Children’s Brain Tumor Foundation (CBTF).


Creating Hope Act

By Erin Puck

Monday, April 11, 2011

Children’s Brain Tumor Foundation is part of the Alliance for Childhood Cancer. TheAlliance provides a forum of national patient advocacy groups as well as medical and scientific organizations which meets regularly, shares ideas and concerns, and works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer.

In March through the Alliance, CBTF participated in a cancer advocacy and rally day on the Hill. CBTF shared personal stories and facts related to a pediatric brain tumor diagnosis with lawmakers and discussed the importance of supporting the newly introduced Creating Hope Act of 2011 (S.606). This legislation is intended to encourage drug development for rare pediatric diseases, including cancer. The bill would allow pharmaceutical companies that develop and obtain FDA approval for a new pediatric rare disease drug to receive a voucher, granting speedier FDA review for any of a company’s other drugs in development. Companies would be entitled to sell the “priority review voucher” to another company, resulting in a potential gain of millions of dollars over its initial investment. The proposal has bipartisan support and offers a new incentive for industry to invest in drug development for small markets. Children with cancer are currently treated with drugs developed for adults in the 1950s, ‘60s, and 70s. The priority review voucher proposal offers a new approach to potentially attracting industry investment.

For the Full Text of the bill:  http://thomas.loc.gov/cgi-bin/query/z?c112:S.606:

Monday, April 11, 2011

Orlando Vacation–April 2011

A couple weeks ago, we went down to Florida to get away from the nasty Northeast weather before Isabella’s next chemo cycle.  We had our own house with a pool which we took full advantage of!  We spent a couple days at Sea World and at Universal’s Islands of Adventure.  Below is a quick slideshow of our vacation along with a couple videos.  Enjoy!


Here is a tour of our vacation home.

Here we are hanging out in the pool.

Isabella flies on the Pteranadon ride at Islands of Adventures.

We ate with the sharks at Sea World!

Annalise and Isabella feed the stingrays at Sea World.