Friday, February 26, 2010

News from the Hill: Staffers Learn about Congenital Heart Disease

On Wednesday, February 24, the American Heart Association and the American College of Cardiology hosted a briefing on Capitol Hill on congenital heart disease (CHD). The event helped to raise awareness about the country’s most common birth defect and educate the audience of congressional staff on the need to look at ways to improve access to care and advance research for CHD patients.

Though heart disease is often perceived as an adult condition, CHD exacts an enormous toll on children. Each year, CHD kills 1,600 infants before their first birthdays, making it the No. 1 killer of children born with birth defects. The good news is that advances in medical research, technology and treatment mean that today most patients live to adulthood however, these adult survivors face an entirely new set of challenges.

Dr. Gerard Martin, Pediatric Cardiologist and Senior Vice President at National Children's Medical Center, joined two You’re the Cure advocates, Jodi Lemacks, a caregiver to her son Joshua, and Lauren Gray, an adult CHD survivor, to discuss the unique challenges of living with congenital heart disease and the need for changes to address these challenges.

State Spotlight! Wisconsin: Go Red at the Capitol

February was a busy month at state capitals across the country, with advocates and state legislators joining together to raise awareness about the No. 1 killer of women, cardiovascular disease- and Madison, Wisconsin was right in on the action!

In addition to the beautiful state Capitol dome “going red”, the women of the legislature helped raise awareness by participating in Wear Red Day. And some legislators even put on a red dress and sneakers for the “Red Dress Dash”.

Additionally, the state legislature got to work passing joint resolutions recognizing American Heart Month, Go Red for Women and Congenital Heart Defect Awareness- and introduced a CPR in high schools bill and a farm-to-school bill.

Now, that was a successful Heart Month! Great Job Wisconsin!

Photo, top left: Women of the capitol photo shoot with Go Red spokeswoman Jennifer Engel of Wisconsin

"The Red Dress Dash", including State Sen. Randy Hopper, R-Fond du Lac, sporting a red dress, carrying a women & heart disease stop sign, while dashing to the Capitol Square

The beautiful Wisconsin State Capitol with red dome and blanket of snow

Advocate Spotlight! Dr. Rob Rockhold, MS

In his junior year of college a week shy of final exams, Rob Rockhold* was called away from school because his 51-year-old father had suffered a fatal heart attack. He lost his father to a disease that soon became the focal point and passion of his advocacy work.

Despite his busy schedule serving as the Assistant Vice Chancellor for Academic Affairs (at the University of Mississippi Medical Center), Dr. Rockhold works tirelessly as an educator, researcher, administrator and advocate for heart disease and stroke prevention issues. He has actively participated in visits to the offices of local elected officials, visited key federal legislators locally and attended National Lobby Day activities.

Dr. Rockhold was instrumental in a recent passage of a cigarette tax in Missippi. He’s also been featured on a local television program, serving as a “chef – advocate” promoting AHA’s “No-Fad Diet” cookbook. He has served on many state and affiliate boards and has been a vital part to advocating for the American Heart Associations’ mission.

Dr. Rockhold will be traveling to Washington, DC this month to advocate for increased NIH funding. With his expertise and knowledge about the importance of funding, he’ll make a compelling case to lawmakers, urging them to increase funds for heart disease and stroke research. Dr. Rockhold works vigorously as a You’re the Cure networker in his hometown, and nationwide – he is a true You’re the Cure champion!
*Please note that the March edition of the Advocacy Pulse contained a typo in Dr. Rockhold's name. Our apologies for the mistake.

Thursday, February 25, 2010

American Heart Association Congenital Heart Disease Congressional Briefing

On February 24th, the American Heart Association joined with the Congressional Heart and Stroke Coalition and the American College of Cardiology to provide a briefing on congenital heart disease. Gerard Martin, MD, pediatric cardiologist and Senior Vice President for the National Children’s Medical Center, Jodi Lemacks, Mended Little Hearts National Program Director and mother of a child with congenital heart disease, and congenital heart disease survivor Lauren Gray spoke at the briefing. Dr. Martin described the devastating impact of this disease on children and families and reiterated the need for more research. Lemacks detailed her family’s struggle with the health insurance system, and Gray spoke about her challenges living with Congenital Heart Disease (CHD) as an adult. CHD remains the top birth defect and killer of infants in the U.S.

Monday, February 15, 2010

Do a President's Day Recess Drop-By For Patients

This week (Feb 15-19), Members of Congress will be back in their home districts for the President's Day Recess. While jobs and the economy are likely to top most Members' agendas, it is critical that they keep hearing from constituents about the need to continue the work on meaningful, comprehensive health care reform for patients- and you can help!

Recently, the AHA released a survey showing that affordability is the number one concern and problem heart disease and stroke patients face in getting the quality health care they need. It is information like this that is so important for our legislators to be hearing as they determine how to move forward with health care reform. That's why the AHA has created a one-pager summarizing the survey results and is asking advocates to do drop-bys during the recess period to share the information with Members.

What is a "drop-by" you ask? It's easy- just follow the steps below!

2) Look up the addresses for the district offices of your Members of Congress. You can easily find this information on your Representative and Senators' webpages.
3) Visit the office when you have a spare moment (during your lunch hour, while your out running errands, etc). You don't need an appointment...just "drop-by" to deliver the handout with the message, "The health care challenges patients face have not ended. Neither should Congress’ efforts to achieve meaningful, comprehensive health care reform." And don't forget to leave your name and contact number with the staff person you talk to.
4) Let us know how it went by shooting us a quick note!

Thank you for all you do!

Tuesday, February 9, 2010

Heart Month Recognized by Nation's Leaders

February is American Heart Month. Check out what our leaders in Washington have to say...

"Heart disease is the leading cause of death in the United States. Its victims are women and men, and people of all backgrounds and ethnicities, in all regions of our country. Although heart disease is one of our Nation's most costly and widespread health problems, it is among the most preventable. During American Heart Month, we rededicate ourselves to fighting this disease by improving our own heart-healthy habits, and by raising awareness in our homes and our communities." -President Obama's American Heart Month Proclamation

To read the full proclamation, visit the White House website.

"This American Heart Month, talk with your doctor about your personal risk for heart disease and the steps to take to lower it. By encouraging all Americans to adopt a healthy lifestyle, we can reduce the threat of heart disease and become a healthier country." -Health and Human Services Secretary Kathleen Sebelius' Heart Month Statement

To read the full statement, visit the HHS website.