On June 6th, over 40 You’re the Cure Advocates from 17 key states came to Washington to urge their Members of Congress to protect funding for the National Institutes of Health (NIH) from automatic budget cuts set to occur in January 2013. If the automatic cuts (or sequester) occurs, the NIH could see cuts that total around 8 percent.

The day started bright and early at a local DC hotel, where our volunteers and participating staff were welcomed by AHA CEO Nancy Brown and Vice President of Federal Advocacy Sue Nelson. After an impressive group photo, AHA President Dr. Gordon Tomaselli briefed advocates about the funding situation and the damage that the NIH could suffer if the automatic cuts occur.

Following a training session on Capitol Hill meetings by Soapbox Consulting’s Christopher Kush, the morning program concluded with a luncheon moderated by incoming AHA President Donna Arnett. Speakers included incoming Chair of the AHA Advocacy Coordinating Committee Dr. Elliot Antman, stroke survivor Barry Jackson, and heart disease survivor Gail Harris-Berry. Barry and Gail are profiled in a complimentary advertisement campaign that is currently running in Capitol Hill newspapers, which shows how NIH research saved their lives.

After the luncheon, our volunteers took to the halls of Congress to meet with their lawmakers and urge them to protect the NIH from funding cuts. Highlights included 10 year-old Olivia Quigley, accompanied by her father, who shared her story with Senator Scott Brown (MA) of suffering a sudden cardiac arrest while in gym class.

Not to be outdone, the Hodge Family, including Maddie Hodge, who was born with a supraventricular tachycardia and is alive today due to medial research, met with Senator Reid from Nevada.

However, all of advocates had a great day of meetings with members and staff. 62 in total!

Great work everyone!

Check out the You’re the Cure Facebook page for continual updates and photos of the event!

On June 6th, Joe Quigley and his daughter Olivia came to D.C. to urge their Massachusetts Members of Congress to protect NIH Funding from automatic budget cuts set for January 2013. When Olivia was just 6 years-old, she suffered a sudden cardiac arrest will in gym class and came to Capitol Hill to tell her story. Her and father meetings included one with Senator Scott Brown.

Read their story below.

My name is Joe Quigley. When my daughter, Olivia, was just six years old, she suffered a SCA during gym class at her school in East Boston. Two teachers who were trained in CPR immediately started to work on her. They worked on Olivia until the EMT’s arrived seven minutes later. The EMT’s then used an AED to restart her heart and Olivia was transported to Mass General Hospital Boston and admitted into the ER. Olivia suffered a second SCA that same day and once again CPR and an AED were used to save her life. Olivia was put into a drug induced coma and put on life support for a week. Prior to that day, Olivia had no preexisting heart condition that we were aware of. In fact, just two days before her event; she had been given the all clear by her pediatrician at her annual checkup. During her stay at MGH, Olivia was given numerous tests including viral and genetic testing to try and find a diagnosis. Unfortunately, every test came back negative and we still to this day have no answers. Olivia has an ICD and is on daily medication. She has a heart monitor next to her bed that reads her heart functions and relays that information back to her cardiologist.

Although it is comforting to know that she is getting the correct treatment, not having a diagnosis is still a big worry. Olivia has a 15 year old brother, Alex, and not having a diagnosis for Olivia means that he could also be carrying the same genetic problems. He could just be a time bomb waiting to go off. What would be the chances for his survival? We continue to search for answers. Olivia is currently in a gene pool research investigation being conducted at Children’s Hospital Boston. I wait every day for the phone to ring with an answer to our questions. Research is so important for us to find out these answers. To find out what happened to Olivia, to potentially have answers for Alex and for all the other kids that we don’t know have a heart condition, we need funding for research.

On June 6th, JW, Kim & Maddie Hodge traveled to DC to urge their Nevada members of Congress to protect NIH Funding from automatic budget cuts, set to occur in January 2013. JW’s daughter Maddie was born with a supraventricular tachycardia, and is alive because of medical research.  One visit included meeting Senator Harry Reid.

Read their story below:

On May 4, 2010, my daughter was born. Within 30 minutes she was in supraventricular tachycardia and quickly being transported to the NICU. I witnessed staff responding utilizing the training that I have helped provide for the last ten years. Medication was administered, treatments were made, and her heart was quickly stopped giving it the chance to restart in a normal rhythm.

Knowing professionally all of the research and work that went into being able to make those quick decisions that saved her life did not even enter my head until days later when I realized that my years of learning, volunteering, and teaching have all been possible because of research.