On February 25th and 26th, Nicole and I made our first trip to the Congenital Heart Legislative Conference in Washington, DC. What is it? A two day event, where CHD survivors and families make the trek to the nation’s capitol with one goal, lobbying Congress to support more funding for CHD research.
We were excited, this was our chance to explain to legislators and their staffs why CHD needs more funding to adequately reflect it’s prevalence in society. Continue reading
We’re excited to have two entries in tomorrow’s event. Gates open at noon, we’ll be slinging chili until we’re out. Hope you all can make it out tomorrow, the weather looks extremely chili friendly, and there isn’t a call for a monsoon in the forecast. Also, famed competitive eater, Joey Chestnut, will be eating an uncolon friendly amount of chili in the afternoon.
Where will YBR/MLH be?
There. Right there.
Can I still get tickets?
Yes. Purchase by midnight online for $10 ($5 for kids)…Online link.
At the gate tickets will be $14.99.
What if I don’t like your chili?
That is impossible.
Are you going to win another trophy?
You can help us by showing your CHD spirit. Be creative.
Knowing something exists doesn’t necessarily mean you know what it is. We knew congenital heart disease existed on June 5, 2011. The next day, we found out what CHD was at our 20 week ultrasound. We immediately made a commitment to learn everything about his defect so that when Holden entered this world we would be ready for the long fight. Continue reading
Dianne Brunner is 69 years old, and has multiple congenital heart defects. This past week, she reached out to us after visiting our website. Reading through her email, a sense of excitement shot through my body. This is without a doubt, every CHD parent’s dream for their child. Continue reading
On March 24, 2010 Cameron Walter Gove was born 4 weeks premature, after needing an emergency c-section at Winnie Palmer Hospital for Women and Babies. Concerns for his heart arose after an extremely high heart rate in utero. We were told Cameron might be blue and not cry when he arrived but, boy did he prove to be a fighter, he came out kicking and screaming. Continue reading
Easton David Seeman, was born on January 30, 2012, one minute after his twin brother, Jaxson. Thanks to today’s modern early detection, we knew Easton was going to be born with a rare syndrome called Heterotaxy, a condition that which affects many organs in the body. Because of Heterotaxy, Easton’s heart is on the right side of his body. Weird and uncommon, but true!
Having just turned 3, Easton has had 3 open heart surgeries, one stomach surgery (with 3 procedures), and 4 catheterizations. Early on, he had an uncertain first few months, including with one cardiac arrest and a seizure during a hospital stay. Continue reading
Marc Daniels is a local icon for sports fans here in Central Florida. While handling play by play duties for the UCF Knights and hosting of one of this area’s first local sports talk radio shows, his voice has echoed through our radios for over 20 years.
His current show, The Beat of Sports, runs on 740 The Game from 9AM to Noon. This week, he graciously recorded a PSA for Yellow Brick Road to run during his broadcasts. Marc Daniels is #CHDAWARE, and we thank him for his amazing support.
You can follow Marc Daniels and the Beat of Sports on Twitter, @TheBeatofSports.