Thank you to our Hearts in July sponsors and in-kind donors!

We're grateful for sponsors and in-kind donors who have helped make Hearts in July possible. Because of their generous support, Broken Hearts of Florida will be able to help families in need through its new Home-Away-From-Home Program, designed to help families stay together when they're children are hospitalized.

Broken Hearts of Florida’s Home-Away-From-Home Program is designed to help Big Bend-area families stay with their kids while they’re hospitalized in Gainesville for heart-related reasons. 

Home-Away-From-Home will provide lodging assistance to families in need, freeing them to focus on what is important -- helping their children get better. Free and low-cost housing and lodging options are available in Gainesville, and they work well for families who need to stay in Gainesville longer than 12 or 15 days. But for stays ranging from 2 to 10 days, these options often don’t work out, leaving families to find other, often more expensive accommodations. Many families simply cannot afford this expense, and find themselves sleeping in the hospital’s lobbies or in their cars. Parents of children in the hospital are under enough stress without the compounded strain of wondering where they will stay while away from home.

Money raised at our first, evening fundraiser -- Hearts in July -- will help us launch the program. Go here for more information about Hearts in July.

Join us for Hearts in July!

Watch our commercial.
Join Broken Hearts of Florida for Hearts in July -- a fun-filled fundraising event for the whole family! The evening includes dinner, a silent auction, supervised kids’ activities, and music and dancing. We’ll also have some special guests!

The public is welcome! Meet some amazing families and heart heroes, learn more about what Broken Hearts of Florida is doing in your community, and have a great time! 

Tickets are $12 per person. All proceeds go toward launching Broken Hearts of Florida’s new “Home-Away-From-Home Program,” helping families stay with their children while they’re hospitalized for heart-related reasons. 

The event will be held Friday, July 26, 2013, from 6 to 10 p.m. at Sittig Hall in Kleman Plaza at 301 S. Bronough St., Tallahassee, FL.

We are also looking for event sponsors and items for our silent auction. 

About Us and Our Home-Away-From-Home Program

Over the past year, we’ve been providing financial assistance to Big Bend-area heart families in need when they’ve had to travel to Gainesville for routine appointments, open-heart surgeries, or other congenital-heart-related procedures at UF Health Shands Hospital for Children and the UF Health Congenital Heart Center, the only medical facility in our region that provides this highly specialized care. The families’ biggest needs have been with overnight and extended-stay accommodations.

Our new Home-Away-From-Home Program will provide lodging assistance to Big Bend-area families in need. While there are free or low-cost lodging options available in Gainesville, such as the Ronald McDonald House, they are often at capacity, leaving families to find other, often more expensive accommodations. 

For many families, this is an expense they simply can’t afford, and so they find themselves sleeping in the hospital’s lobbies or in their cars. These parents are under enough stress without the compounded strain of wondering where they will stay while they’re away from home.

Founded in 2006, BHF is a nonprofit, charitable organization that supports, educates and connects families affected by congenital heart defects and other pediatric heart diseases. We have chapters based in Tallahassee, Gainesville and Panama City that serve those cities and surrounding counties. 

We started as a small group of three families and today, we are 250 families strong. Our services have expanded with our growth and are designed to help families navigate the lifelong journey of living with congenital heart defects and pediatric heart disease. 

Meet & Greet Lunch with Nels Matson

Meet Nels Matson!

Join us for lunch with Nels Matson, who is running 1,200 miles in 35 days from Bradenton, FL, to the Royal Embassy of Cambodia in Washington, D.C. 

Broken Hearts of Florida will host lunch for Nels and Diplo on Sunday, June 23, from 1 to 3 p.m. at Chili's at 3530 S.W. Archer Road, Gainesville. RSVP for lunch through our Facebook event page, or email us at info@brokenheartsflorida.org and let us know you are attending the lunch and how many will be with you. 

If you or your child has a congenital heart defect, come out and sign Diplo, the Diplomatic Penguin, who is riding on Nels’ back. You’ll also have a chance to meet Nels’ Gainesville Heart Diplomat, Sage Pridemore, a local CHD survivor.

Nels, Denise and Diplo at Broken Hearts' May Day Picnic. 

There are about 100,000 children in Cambodia who have congenital heart disease; very few are treated. Nels is running to fund heart surgeries for these children through Hearts Without Boundaries. Nels was saved by an open-heart surgery when he was a toddler, and wants to give these children the same opportunity at life he was given!

Nels’ journey began June 15 in Bradenton. Diplo the penguin will be given as a gift and symbol of support to the children receiving the heart surgeries in Cambodia.

For more information about Tri4Number1 Run, visit http://www.t41run.com/.

Oil Change Fundraiser for Broken Hearts of Florida

Join us Monday, May 27, at Super Lube at
6541 Thomasville Road (near Bradfordville Road)
between 8 a.m. and 4 p.m. for our
 Oil Change Fundraiser!

You get 50% off your oil change, plus free lunch! While Super Lube changes your oil, you can enjoy a hot dog or and hamburger, a bag of chips and ice cold drink! And, a portion of the proceeds go to Broken Hearts of Florida to help families affected by congenital heart disease and other pediatric heart diseases.

Listen to our radio ad.

Our programs and services include:

• a Financial Assistance Program for heart families who need assistance during a planned or unexpected hospital stay;
• PICU Family Dinners, a weekly event held in the Pediatric Intensive Care Unit and UF Health Shands Children’s Hospital where families in the Unit enjoy a free meal and good company;
• Food from the Heart Pantry, a source of free, quick, nutritious snacks and light meals for families in the Pediatric Intensive Care Unit and UF Health Shands Children’s Hospital;
• Care Packages for children and families who are in the hospital; and ouR
• May Day Picnic, an annual daylong event in Gainesville for heart families and their health-care providers.

Come get your oil change for half-price, get a free lunch and support an organization that supports, educates and connects families affected by pediatric heart disease. 

We sincerely thank Super-Lube and Cumulus Radio

for their generous support of Broken Hearts of Florida! 

For more information, contact us at info@brokenheartsflorida.org.

Broken Hearts of Florida Achieves Public Charity Status with Internal Revenue Service

After six years of operating as simply a nonprofit corporation in the state of Florida, Broken Hearts of Florida Inc. applied earlier this year for tax-exempt recognition from the Internal Revenue Service. It was an important step for if the organization wanted to move forward, grow and provide more programs, services and resources for its heart families. 

GOAL ACHIEVED! 

Broken Hearts of Florida Inc. -- which supports, educates and connects families affected by congenital heart disease and other pediatric heart diseases -- received its Letter of Determination today from the Internal Revenue Service, declaring BHF tax-exempt under section 501(c)(3) of the Internal Revenue Code. All contributions to BHF are tax-deductible under section 170 of the Code. Further, BHF is considered a Public Charity by the IRS. 

Broken Hearts of Florida was founded in 2006 as a local support group, Broken Hearts of the Big Bend. It was established as a nonprofit corporation with the Division of Corporations with the State of Florida in 2007. 

"Our families are the core of our organization," said Karen Thurston Chavez, BHF Founder and BHF's executive director of operations and outreach. "We're looking forward to a fantastic 2013!"

In late 2010, Broken Hearts of the Big Bend changed its name to Broken Hearts of Florida to reflect its growth. Broken Hearts has grown from just a handful of Big Bend Region families to more than 200 families from all across Florida, with concentrated membership throughout the Panhandle and North Central regions of the Sunshine State. We have three chapters -- Big Bend Region (Tallahassee and surrounding counties), Emerald Coast (Panama City and surrounding areas) and Central Florida (greater Gainesville and Ocala areas). 

In the beginning, our services in the beginning consisted simply of occasional meetings and moral support. Today, Broken Hearts of Florida provides:

• a Financial Assistance Program to heart families in need; 
• the Food from the Heart Pantry at the UF Health Shands Children's Hospital Pediatric Cardiac Intensive Care Unit; 
• care bags for children and families in the hospital; 
• a weekly meal for families in the UF Health Shands Pediatric Cardiac Intensive Care Unit; and
• regular dinner meetings.

For more information about Broken Hearts of Florida and to find out if there are Broken Hearts families in your area, contact us:

• Email: info@brokenheartsflorida.org
• Like us on Facebook: Broken Hearts of Florida
• Follow us on Twitter: @BrknHrtsFL
• Office: 850.668.5864 | Fax: 850.668.5865
• P.O. Box 180423, Tallahassee, FL 32318

CHD Awareness Week Proclaimed in Florida

It's Congenital Heart Defect Awareness Week. Each year from Feb. 7-14, the congenital heart community pushes extra hard to raise awareness of congenital heart defects. All over Florida, our heart moms and heart dads, heart kids and heart grown-ups, tell their stories of diagnosis, surgery and treatment, and of courage and strength. We've created a fact sheet for you, if you want more information about congenital heart defects.

So many people will stay to us, "I don't know how you've managed; I don't know if I could do it." And our answer often is, "You manage. You find a way. You have to." 

To all of our heart heroes and our heart angels, to all of our heart parents, siblings, grandparents, aunts, uncles, cousins, friends and admirers ... to all of our physicians, our nurses, our social workers, our therapists, our caregivers ... 

WE LOVE YOU WITH ALL OUR HEARTS!

Florida Gov. Rick Scott officially proclaimed Feb. 7-14 as
Congenital Heart Defect Awareness Week.

Pulse Oximetry: Newborn Screening for Congenital Heart Disease

Pulse oximetry helps detect congenital heart defects
when performed at some point after 24 hours of life.
It is painless, noninvasive and practical.

The Florida Legislature has been considering Senate and House bills that would require hospitals throughout the state to add critical congenital heart disease (CCHD) to the panel of 35 newborn screening tests that Florida hospitals already do after a child is born.

The test they would add is called pulse oximetry and it is an inexpensive, painless, noninvasive way to increase the likelihood of hospital staff to detect CCHDs in newborns.

Early diagnosis and treatment of congenital heart defects greatly improves a baby's chances of leading a healthy, typical life. Delayed diagnosis can lead to death or injury to babies. According to the American Academy of Pediatrics, numerous studies show that adding pulse oximetry to the newborn assessment can enhance CCHD detection of CCHD. 

As children, parents and loved ones affected by CHD, we all understand on a first-hand basis the effects of CHD. This legislation presents us with an opportunity to help educate our elected officials on the prevalence of CHD and on pulse oximetry as an inexpensive, painless, noninvasive way to increase the chances of physicians detecting CHDs in newborns. Most importantly, we can ask them to vote yes to help increase positive outcomes for affected newborns and their families. 

If you would like to contact your Florida legislator and tell him/her to support SB 1052 and HB 829, here's how you can do it.  

Please take a moment to copy, paste and personalize the letters below and send them via email to your senator and representative. The highlighted sections are the areas that will require you to either fill in additional information or personalize.

If you do not know who your legislators are, you can find out by clicking this link and entering your address. 

Sample Letter to Senator   

The Honorable [Senator name]

Florida Senate

Address

Dear Senator[name]:

My name is [name] and I live in [city] in your district. I’m asking you today to vote yes on Senate Bill 1052, Newborn Screening for Congenital Heart Defects, which would require pulse oximetry screening for every newborn. This inexpensive screening will save lives and improve the outcomes for hundreds of babies born with broken hearts.

[Insert your story here. Try to keep it to five or fewer sentences. If pulse oximetry helped to diagnose your child, say that]

Pulse oximetry helps detect congenital heart defects when performed at some point after 24 hours of life. It is painless, noninvasive and practical. Hospitals already have the equipment, and, in most cases, it takes less time to perform the screening than it does to change a diaper. Similar bills have been passed in Maryland, New Jersey and Indiana, and many other states are considering pulse oximetry screening laws.

Thank you, [Senator name], for taking the time to read this letter. I look forward to hearing the results of the vote. Again, please vote yes on Senate Bill 1052.

Sincerely,

[Your name]

Sample Letter to Representative

The Honorable [Representative name]

Florida House of Representatives

Address

Dear Representative [name]:

My name is [name] and I live in [city] in your district. I’m asking you today to vote yes on House Bill 829, Newborn Screening for Congenital Heart Defects, which would require pulse oximetry screening for every newborn. This inexpensive screening will save lives and improve the outcomes for hundreds of babies born with broken hearts.

[Insert your story here. Try to keep it to five or fewer sentences. If pulse oximetry helped to diagnose your child, say that]

Pulse oximetry helps detect congenital heart defects when performed at some point after 24 hours of life. It is painless, noninvasive and practical. Hospitals already have the equipment, and, in most cases, it takes less time to perform the screening than it does to change a diaper. Similar bills have been passed in Maryland, New Jersey and Indiana, and many other states are considering pulse oximetry screening laws.

Thank you, Representative [name], for taking the time to read this letter. I look forward to hearing the results of the vote. Again, please vote yes on House Bill 829.

Sincerely,

[Your name]