Bleeding Disorders Foundation of Florida

Self-Infusion 101
2020-05-01 16:00 - 17:00 UTC | FL
Here is your chance to join an interactive webinar and learn the basics of self-infusion
Friday May 1, 2020
4:oopm
Hosted by
Leanne Buchanan, RN
Hemophilia Outreach Nurse
Our Education and Outreach nurse Leanne will present a Self-Infusion 101 class. You will be able to watch all the steps and once life is back to normal one of our nurses will schedule a visit so you can practice infusing your factor.
Please RSVP By April 30, 2020
Email: info@bleedingdisordersfl.org
Phone: 800-293-6527
Once you we have your RSVP you will be sent the instructions on how to log in the day of the webinar.
*By RSVPing to this event you hereby grant the Bleeding Disorders Foundation of Florida permission to use your likeness in a photograph, video, or other digital media (“photo”) in any and all of its publications, including web-based publications, without payment or other consideration.*

Mental Health Matters: Maintaining Your Mental Health in Uncertain Times
2020-04-30 19:00 - 20:30 | FL
Maintaining Your Mental Health In Uncertain Times: Let’s Talk About It
In response to the anxiety generated by the coronavirus outbreak, Mental Health Matters Too has created a practical webinar to address the increased stress level of members in the bleeding disorders community. The webinar will cover:
Common reactions to crisis
Our natural stress response and ways to minimize its negative impact
The distinction between situational stress and an anxiety condition
Creating a personalized stress management toolkit
Resources for mental health information and care
Speaker Bio:
Debbie de la Riva, LPC has been an active member of the bleeding disorders community since the birth of her son with severe hemophilia 25 years ago. She served as the Executive Director of the Lone Star Chapter of the National Hemophilia Foundation, was a co-chair of a NHF Annual Meeting, and received a Ryan White Award for Advocacy Excellence. In 2018, Ms. de la Riva founded Mental Health Matters Too as a way of combining her degree as a licensed professional counselor with her passion of helping community members struggling with mental health challenges. The mission of MHMT is to normalize the discussion of mental health issues within the bleeding disorders community, provide information on various mental health concepts and help community members locate resources for mental health care and support.
Please RSVP to info@bleedingdisordersfl.org for login information.
Moderated by BDFF Outreach and Education Nurse, Leanne Buchanan, RN

Step Therapy Webinar
2020-04-29 14:00 - 15:00 | FL
At this webinar, we will discuss what step therapy is and how it affects the bleeding disorders community. Mark Hobraczk with the Hemophilia Federation of America will lead this discussion and answer questions.
We will also have a patient in the webinar with us to tell her story and give tips on how to push this issue forward for the 2021 Florida legislative session.
Please RSVP to info@bleedingdisorderscoalitionofflorida.org for the log in information.
This is a great way for you to become an advocate for yourself and the bleeding disorders community of Florida!

BDFF Webinar: Emergency Preparation With a Bleeding Disorder
2020-04-21 19:00 - 20:00 | FL
So many families need preparation for a Hemophilia emergency! This presentation will assist families with helpful tips!
What to expect at ER
Prep for emergencies
Prep for travel
Advocating
Medical ID / medic alert
Picking an ER
Your Go Bag
Your Emergency Plan
When to go to the ER
What happens when you get to the ER
Communicating with Providers
Patient Rights
There will be time for questions and answers.
Presented by Bayer nurse, Linda Peacock
RSVP to info@bleedingdisordersfl.org and you will receive login information.
Brought to you by Bayer

BDFF World Hemophilia Day Online Trivia
2020-04-17 19:00 - 20:30 | FL
Curtis Earth has been hosting his quiz online since the closing of the local restaurants. He was featured this week in Orlando Date Night guides favorite virtual things to do.
We are going to have Curtis quiz us in our homes through the Zoom app. We will send out the link that will put you on Zoom and introduce you to Virtual Trivia with Curtis Earth!! You can even create remote teams.
BDFF World Hemophilia Day Online Trivia is our time to celebrate and create awareness for bleeding disorders! There will be bleeding disorders trivia included so being knowledgeable about your disorder is your advantage!
RSVP to info@bleedingdisordersfl.org for link to play. There is no cost for members of our bleeding disorders community to play.
Game on!

BDFF Happy Hour
2020-04-16 16:00 - 17:00 | FL
BDFF Happy Hour
April 16th at 4pm
Topic: What’s in a name?
RSVP to info@bleedingdisordersfl.org for login information

Webinar: Understanding Gene Therapy Research
2020-04-14 19:00 - 21:00 | Seasons 52, 7700 W. Sand Lake Road, Orlando, FL, 32819, United States
Understanding Gene Therapy Research Webinar
(This webinar is replacing the dinner due to COVID-19)
Tuesday
April 14, 2020
Webinar will begin at 7:00pm
Presented by Laureen Temple, Senior Patient Education Liaison with Spark Therapeutics
This presentation is intended to walk you through the journey that started over 50 years ago with the beginnings of gene therapy research. We will walk through the basics of genetics and how that plays a role in hemophilia. With that knowledge, we will look at how gene therapy is meant to work and discuss both the potential for and the challenges of investigational gene therapy research in hemophilia today.
Please RSVP By April 10, 2020
Email: info@bleedingdisordersfl.org
Phone: 800-293-6527
Once you we have your RSVP, you will be sent the instructions on how to log in.
This webinar is sponsored by
Spark Therapeutics

BDFF Happy Hour
2020-04-07 16:00 - 17:00 | FL

*CANCELLED* Superhero Fun Walk Registration Party at Tampa Lightning Game
2020-03-28 06:00 - 21:00 | FL
**NOTE: DUE TO THE CDC RECOMMENDATIONS ON COVID-19, THE NHL HAS CANCELLED THEIR HOCKEY SEASON. AS SUCH, AND IN KEEPING WITH THE HEALTH AND SAFETY OF OUR ATTENDEES, WE HAVE CANCELLED THIS EVENT AS WELL. **
REGISTRATION PARTY:
March 28th at the Amalie Arena
LIGHTNING VS. RANGERS
Educational Program & Dinner Included
Program starts at 5 pm; Game starts at 7 pm
You must be registered for the walk to attend!
RSVP to info@bleedingdisordersfl.org

Gainesville Blaze Pizza Fundraiser
2020-02-26 18:00 - 21:00 | Blaze Pizza– Archer, 3617 SW Archer Rd, Gainesville, FL, 32608, United States

Special Program: Pushing Through Life's Challenges
2020-02-21 17:15 - 22:00 | FL
Please join the Bleeding Disorders Foundation of Florida
for a very special family event and dinner
PUSHING THROUGH LIFE’S CHALLENGES
Presented by Seth Rojhani
Friday February 21, 2019
5:15 p.m.
(please be on time for this great program)
Amway Center
400 West Church Street #200
Orlando, FL 32801
After the program enjoy the game of the season
Orlando Magic vs Dallas Mavericks!
Entrance Details
Attendees will enter through the Administration Entrance,
which is located to left of the Magic Team Shop on the corner of S. Hughey Ave. and Church St.
The program will be in the Amway Center’s Bank United Vault Room.
You will be escorted to the program by Magic staff.
Backpack & bags larger than 14 in. x 14 in. x 6 in are prohibited
RSVP by February 19, 2019
1-800-293-6527 or info@bleedingdisordersfl.org
Tickets are limited & are available on a first come, first served basis
(for immediate family members only, please).
The program must be attended to receive tickets.
This program is supported by Octapharma.

2020 Advocacy Days
2020-02-18 08:00 - 2020-02-19 21:00 | FL
Join the Bleeding Disorders Foundation of Florida and the Bleeding Disorders Coalition of Florida in Tallahassee as we advocate for the bleeding disorders community.

Legislative Webinar
2020-02-11 18:30 - 20:00 | FL
Informative and interactive webinar about BDCF 2020 legislative priorities. At this webinar, you will learn about BDCF bills and how to communicate with your legislators about them. This webinar is for anyone who wants to be able to speak on behalf of the bleeding disorders community either at BDCF Legislative Days or on your own.
RSVP to info@bleedingdisorderscoaltionofflorida and you will receive log in information.

18th Annual Evening on Broadway
2020-02-01 18:00 - 22:00 | Dr. Phillips Center for the Performing Arts, 445 S. Magnolia Ave., Orlando, FL, 32801, United States
Come spend an evening in Agrabah and be a REAL genie and grant some kids (summer camp) wishes!I
BDFF is pleased to host the 18th Annual Evening on Broadway, one of our most popular fundraisers! This event includes a reception with light h’oeuvres, a silent auction and raffle, and orchestra seating to the broadway show of Disney’s Aladdin.
When you purchase tickets to events like the 18th Annual Evening on Broadway, 89% of each dollars goes back to supporting the bleeding disorders community in Florida by funding Camp Spirit scholarships, emergency financial assistance, educational programming, scholarships, MedicAlert memberships, helmets, and more.
Link to purchase tickets coming soon. Mark your calendars now!

Orlando Story Club: Past Our Bedtime
2020-01-28 08:00 - 17:00 | FL
Join Orlando Story Club at The Abbey and 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!
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!
All proceeds support Bleeding Disorders Foundation of Florida
Doors 6:30pm/Show 7pm
To purchase tickets, click here.

BDFF CALVIN DAWSON MEMORIAL SCHOLARSHIP APPLICATIONS OPEN
2020-01-23 - 2020-04-30 | FL
Amount: Number and amount of scholarships varies
Candidate: Florida residents with bleeding disorders attending a college, university or trade school.
Deadline: April 30, 2020
Contact: Bleeding Disorders Foundation of Florida 1350 Orange Ave, Suite 227 Winter Park FL 32789
(800)293-6527
(407)629-0000
Fax: (407) 629-9600

Click here for the 2020 scholarship application.

Moving Forward: Staying Active with a Bleeding Disorder
2020-01-22 18:00 - 20:00 | Saltgrass Steakhouse, 905 E Gregory St, Pensacola, FL, 32502, United States
Join the
Bleeding Disorders Foundation of Florida
for a very special program
MOVING FORWARD
Staying Active with a Bleeding Disorder
Speaker
Mary Ann Massolio
Wednesday
January 22, 2020
6:00 pm
At the
Saltgrass Steak House
Pensacola Beach, FL 32502
Please RSVP by
January 20, 2020
Call – 800-293-6527 or
Email – info@bleedingdisordersfl.org
This program is sponsored by CSL Behring

Office closed
2020-01-20, 2020-01-01 | FL

2020 BDFF Red Party
2020-01-18 18:00 - 21:00 | American Muscle Car Museum, 3500 Sarno Road, Melbourne, FL, 32934, United States
Wear red for bleeding disorders awareness at this inaugural fundraiser! Events like the BDFF Red Party is one of the only ways to view the amazing display of 400+ cars at the American Muscle Car Museum in Melbourne, Florida. Cocktail attire!
Tickets are:
$200 for VIP Private Tour by owner Mark Pieloch + Reception
$100 for Adult Ticket to Reception
Reception includes light hors d’oeuvres + live auction + access to museum
89% funds go back into serving the bleeding disorders community by sending BDFF kids to Camp Spirit, emergency financial assistance, scholarships, MedicAlert identifications, helmets, educational programming, and more.
Visit hemophiliaflorida.org/redparty to purchase tickets or sponsor

Legislative session starts
2020-01-14 | FL

Generation IX 2020 Leadership Training
2020-01-07 08:00 - 2020-01-12 17:00 | Pigeon Key, Florida Keys
Registration for the Generation IX 2020 Leadership Training in the Florida Keys is NOW open for all! Generation IX Leadership is an intensive, community-building training, where you will gain insights about yourself and your community in an encouraging learning environment.
Here are the details:

Open to eligible adults 18-35 with a hemophilia b diagnosis

Dates: January 7th – 12th, 2020

Airfare, lodging, and participation fully supported and you’ll be flying in and out of Miami and lodging in community housing at beautiful and remote Pigeon Key

You can apply by clicking this link and completing an application through our CampDocs portal: app.campdoc.com/register/gutmonkey
The Coalition for Hemophilia B‘s Generation IX Project is designed and delivered in partnership with the team at GutMonkey, and is solely sponsored by Aptevo. Learn more about Generation IX here: https://www.gutmonkey.com/generationixleadership

Orlando Holiday Party
2019-12-08 11:00 - 13:00 | Aloft Hotel, 500 S. Orange Ave, Orlando, FL, United States
Please Join
The Hemophilia Foundation
of Greater Florida
-for a very special family holiday event-
Bleeding Disorder Trivia
A fun interactive Quiz Game Show for families of all ages
Sunday, December 8, 2019
11:00 am
At the
Aloft Hotel
500 S. Orange Ave
Orlando, Florida
The days includes trivia, brunch and enjoy fun family activities
R.S.V.P. by December 2, 2019
1-800-293-6527
info@bleedingdisordersfl.org

Gainesville Holiday Party
2019-12-07 10:30 - 12:30 | Reitz Student Union, 655 Reitz Union Dr Room 2355, Gainesville, FL, 32611, United States
Please Join The
University of Florida Health/Shands Hospital
&
The Hemophilia Foundation
of Greater Florida
-for a very special family event-
HOLIDAY TRIVIA & FUN
Saturday, December 7, 2019
10:30 am
At the
REITZ STUDENT UNION
Room 2355 655 Reitz Union Dr, Gainesville, FL 32611
The days includes Holiday Trivia Fun, Food and Special Guest, a family Celebration for all
R.S.V.P. by December 3, 2018
1-800-293-6527
info@bleedingdisordersfl.org

Jacksonville Holiday Party
2019-12-01 10:00 - 13:00 | Hyatt Regency Jacksonville Riverfront, 225 East Coast Line Drive, Jacksonville, FL, 32202, United States
Please Join
Nemours Children’s Clinic, Jacksonville
&
The Hemophilia Foundation
of Greater Florida
-for a very special family holiday event-
Holiday Trivia
A fun interactive Quiz Game Show for families of all ages
Sunday, December 1, 2019
10:00 am
At the
Hyatt Regency Jacksonville Riverfront
225 East Coast Line Drive, Jacksonville, Florida, 32202
The days includes trivia, brunch and enjoy the Football Game of the Season
IMMEDIATE FAMILY MEMBERS ONLY YOU MUST ATTEND THE PROGRAM TO RECEIVE A TICKET.
TICKETS ARE VERY LIMITED
JACKSONVILLE JAGUARS VS TAMPA BAY BUCCANEER
R.S.V.P. by November 22, 2019
1-800-293-6527
info@bleedingdisordersfl.org

2020 Legislative Strategic Planning Session
2019-11-13 18:00 - 20:00 | Winter Park Center for Health & Wellbeing, 2005 Mizell Ave Suite 800, Winter Park, FL, 32789, United States

BDFF Fundraiser at Wing Shack
2019-11-05 17:30 - 2019-11-06 20:30 | Wing Shack, 4650 E. Michigan St., Orlando, FL, 32812, United States
Orlando! Eat at Wing Shack and BDFF gets a portion of the proceeds!
When: Nov. 5th at 5:30 pm – Nov. 6th at 8:30 pm
Where: Wing Shack, 4650 E. Michigan St., Orlando, Fl 32812

23rd Annual Flight For Tomorrow Golf Tournament
2019-10-28 09:30 - 17:30 | Ardea Country Club, 1055 E Lake Woodlands Pkwy, Oldsmar, FL, 34677, United States
This fundraising event benefits the Bleeding Disorders Foundation of Florida.
SCHEDULE OF EVENTS
9:30 a.m. Open Registration
10:30 a.m. Lunch
12:00 p.m. Shotgun Start
Sponsorships available. One individual golfer is $200.

2019 Orlando Creepy Crawl 5K & Vampire Mile
2019-10-26 16:00 - 19:30 | Harbor Park at Lake Baldwin, 4990 New Broad Street, Orlando, FL, 32814, United States
Boo! We are creepy crawling again in Orlando for bleeding disorders! Register for the 5K or the fun walk… either way will be fang-tastic amounts of fun!
After the Creepy Crawl, stay for an awards ceremony and Halloween Party.
Online registration is open now!

2019 Jacksonville Creepy Crawl 5k & Vampire Mile
2019-10-12 07:00 - 11:30 | Nocatee Community, 245 Nocatee Center Way, Ponte Vedra, FL, 32081, United States
Boo! Are you ready to creepy crawl in Jacksonville for bleeding disorders? BDFF is hauntingly hosting a 5K and Halloween party! If you don’t want to do the creepy crawl 5K, you can also do a fun walk instead.
Registration link is below. We encourage team registrations and fundraising!
When: Oct. 12, 2019
Where: Nocatee Community, 245 Nocatee Center Way, Ponte Vedra, Fl 32081
Online registration available through 10/11.
Onsite registration begins at 7 am
5K Creepy Crawl begins at 8 am
Walkers leave after 5K Creepy Crawlers take off
Please wear costumes… awards will be given out for best costumes and top fundraisers!
Register now at https://secure.qgiv.com/event/942400/
