Monday, October 1, 2012

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:



Thursday, February 9, 2012

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.

Wednesday, February 8, 2012

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]