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It’s Valentine’s Week and HFGF is proposing… that you register for the 2020 Gator Clot Trot 5K and Fun Walk!  Use this sweet week to sign up and invite all of your dearest ones to do so as well.

The 2020 Gator Clot Trot is on March 14th at Depot Park.  Onsite registration begins at 11:30 AM and the 5K takes off at 12:30 PM.  Walkers leave after all 5Kers are done. 

Don’t forget, HFGF loves you and 89% of all fundraising dollars support the bleeding disorders community by:

Sending HFGF kids to Camp Spirit
Funding HFGF students with scholarships
Helping HFGF patient when they need emergency financial assistance and other items like Comfy Caps and MedicAlert memberships
Providing educational programs for HFGF families

Thank you for being an HFGF Valentine this week and always!

CLICK HERE TO REGISTER NOW!

 

 

Past Our Bedtime
Wednesday, February 5, 2020 | The Abbey | 7:00 pm

Come hear stories about rebellion, a time when sleeping took a backseat to life, or the moment when we channeled our inner-child and laughed ourselves silly. Who knows what we will hear on the OSC stage with Past Our Bedtime?!

All proceeds support Hemophilia Foundation of Greater Florida (HFGF). HFGF helps people with bleeding disorders improve their lives by providing tuition to a medically supervised camp, scholarships, emergency financial assistance, educational programming, and more.

Admission: $5 (additional donations encouraged)

Doors open at 6:30 p.m.; Show starts at 7:00 p.m.

Click here to purchase your tickets now

Anyone with a story can put their name in the hat for a chance to share a 5 minute story. 10 names will be drawn at random. 3 randomly selected judges from the audience will score the storytellers. 1st, 2nd, and 3rd place winners receive a prize!

Come laugh, listen, drink, and help build our community!


The Houvouras Family

Reside: Vierra
Hometown: Father – Palm Beach Gardens | Mother – Hackensack, New Jersey
Involvement with HFGF: 14+ Years

If you are attending the Hemophilia Foundation of Greater Florida’s Red Party January 18 at the American Muscle Car Museum to ring in 2020, be sure to say hello to the local Houvouras family.

Residents of Vieira, Andrew and Rayna are the parents of Kooper, 14, and 16-year-old Preston, who was diagnosed with Hemophilia A at age 3.

“I want Preston to get more involved with giving back,” says Andrew, who says they first reached out to the Foundation after Preston was diagnosed. “It will only be another two years before he is going off to college.”

As a baby, the undiagnosed Preston, now a junior at Cocoa Beach Jr./Sr. High School, almost lost his life from a nosebleed in 2007. At first, doctors believed surgery would cure his nose bleeds, but that was unsuccessful. A pediatrician then informed Andrew and Rayna that in the absence of trauma, their son was showing signs of three ailments: Leukemia, a brain tumor or a bleeding disorder. He was tested for all three.

Andrew and Rayna recall that receiving the news at Arnold Palmer Children’s Hospital in Orlando that Preston had Hemophilia was a sense of relief. Even more positive was that Preston had moderate Hemophilia A (4 percent of clotting factor) and would not need to infuse.

“It was the lesser of three evils,” says Rayna, who adds there is no history of Hemophilia in the family. “We were dealt the best hand we could have asked for,” adds Andrew.

Preston, who knows of no other life than having a bleeding disorder, has lived a pretty normal life. As with any child diagnosed with a bleeding disorder life was a bit nerve racking at first.

“I bubbled him when he was little,” says Rayna. “But I knew how important it was to let him live the life of a normal kid.”

Growing up, Preston learned coping mechanisms from his parents—Andrew is a behavioral analyst and Rayna a mental health counselor—and he understands that in the scheme of things, he is lucky. He knows others have a tougher road to haul, including a friend who has Type A diabetes. And while he may not be able to participate in contact sports—at age 11 he wanted to play soccer, but that was negated unless he wanted to begin infusing—he turned to swimming and baseball, the latter of which he hopes to turn into a career. The lanky six-foot-tall lefty pitches and plays first base for the high school’s varsity team. An A student, Preston is enrolled in the school’s IB program.

“He is super busy, super active, and super healthy,” says Andrew. “He does not let Hemophilia define him.”

While he still may bleed spontaneously, it only occurs through the nose, which avoids any joint-associated complications. Nonetheless, the bleeds can occur up to four times a month.

“Every single nosebleed is just as scary as the first one,” admits Rayna. “It can alarming.”

Determined to become more involved with giving back and helping out the Foundation, Andrew is planning to launch Hits for Hemophilia, in which money will be donated for base bits accumulated by his sons. Preston’s brother, Kooper, is a well-rounded ball player as well.

“We have always had great support, especially when Preston was younger and we didn’t really know much about hemophilia,” says Andrew. “We consider ourselves lucky.”

FOR IMMEDIATE RELEASE

December 19, 2019

Contact: Leah Nash

leahnash@hemophiliaflorida.org

407.629.0000 X103

Hemophilia Foundation Presents Aladdin at Dr. Phillips Center

Hemophilia Foundation of Greater Florida fundraiser supports bleeding disorders community

The Hemophilia Foundation of Greater Florida (HFGF) is pleased to present its 18th Annual Evening on Broadway, February 1, 2020, featuring Disney’s Aladdin live on stage at the Dr. Phillips Center for the Performing Arts in downtown Orlando.

 

Tickets to this special presentation include a pre-reception with heavy hors d’oeuvres, a silent auction and raffle, as well as premiere seating for $150. The reception begins at 6 p.m., followed by the performance.

 

The 18th Annual Evening on Broadway supports the Florida bleeding disorders community through family support weekends, health educational programs, financial emergency assistance, student scholarships and sending HFGF patients to Camp Spirit, a medically supervised summer camp. Eighty-nine percent of money raised through HFGF fundraisers go toward the bleeding disorders community in Florida.

 

“The cost of treatment varies for those who have hemophilia and other bleeding disorders, however, costs are typically extraordinary due to the price of medication, as well as the number of times it must be administered,” says Fran Haynes, Executive Director of the HFGF, which has been serving the bleeding disorders community since 1996. “Our patients need us, and we are here to help them.”

 

Tickets for the evening are available for purchase at hemophiliaflorida.org/fundraising/evening-on-broadway. HFGF is also seeking silent auction and raffle gifts. If your company would like to donate, please contact leahnash@hemophiliaflorida.org, or call 407.629.0000.

 

Please visit hemophiliaflorida.org for more information about HFGF, hemophilia and other bleeding disorders, and/or HFGF fundraising walks. Personal chronicles can found at hemophiliaflorida.org/what-we-do/voices-of-hfgf.

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Note to media: If you’d like more information about the Hemophilia Foundation of Greater Florida, or to schedule an interview with HFGF staff or members of the bleeding disorders community, please contact Leah Nash at leahnash@hemophiliaflorida.org or 407.629.0000 X103.

CHANGE THEIR WORLD. CHANGE YOURS. THIS CHANGES EVERYTHING.