Advocacy

Congenital Heart Lobby Day 2012 Registration

All are invited to Congenital Heart Lobby Day 2012 on March 1, 2012 to ask our legislators to fund needed research for congenital heart defects and improve and enhance data collection for this population.  There will be a reception sponsored by the American College of Cardiology on the evening of February 29, 2012.  Click here for the reception invitationClick here for detailed information about Lobby Day — Ready, Set, Lobby.

To register for Congenital Heart Lobby Day, please click here.  You can also call 1-888-HEART99 to register.  Please call Amy Basken at (608) 370-3739 or email at advocacy@mendedlittlehearts.org with questions.

Exciting Advocacy Update!

Thanks to your efforts, $2 million was approved in the budget for the Congenital Heart Futures Act so the Centers for Disease Control and Prevention can begin to improve data collection for the CHD population!

Mended Little Hearts Advocacy

Mended Little Hearts advocates, both locally and nationally, on issue to help improve and prolong the lives of those living with congenital heart defects.

Some of our advocacy efforts have included:

  • Congenital Heart Lobby Day 2008 and 2009—Mended Little Hearts co-hosted the Lobby Day and our members advocated for the passage of the Congenital Hearts Futures Act (for full text, click here), which was passed into law in March 2010;
  • Congenital Heart Lobby Day 2010—Mended Little Hearts co-hosted the Lobby Day and our members advocated for funding for the Congenital Heart Futures Act;
  • Pulse Oximetry Webinars—Mended Little Hearts and the American College of Cardiology co-hosted educational webinars on the implementation of pulse oximtry screening in newborns;
  • Pediatric Thinktank for Cardiovascular Disease Drug and Device Safety—Mended Little Hearts represented the parents’ perspective for the FDA’s (Food and Drug Administration) Pediatric Thinktank;
  • Advocacy with Other Organizations—Mended Little Hearts has worked with other organizations to ensure that healthcare for those living with congenital heart defects is affordable and accessible.

Mended Little Hearts’ current policy objectives are:

  • Sustained and increased funding for congenital heart disease research for the Centers for Disease Control and Prevention and National Institutes of Health;
  • Implementation of Pulse Oximetry Screening at the State level;
  • Improve population-based data collection for a better understanding of heart defects across the lifespan;
  • Monitoring health issues related to accessibility and affordability of healthcare.

Congenital Heart Futures Act

Pulse Oximetry Advocacy

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Next Meeting

September 19, 2012, 7 pm
Ronald McDonald House
Dr. James Priest, a pediatric cardiologist at Stanford, will give an informative lecture on the genetics of CHD and his ground-breaking research in this field.

October 8, 2012, 7 pm
Ronald McDonald House
Bill Coon is a two-time heart transplant recipient, first-time kidney transplant recipient, HLHS survivor, author and motivational speaker and he will be sharing with us his life story and adventures.

We typically meet on the third Wednesday of each month at
7:00 pm at the
Ronald McDonald House at Stanford
520 Sand Hill Road Palo Alto, CA 94304