Bleeding Disorders Foundation of Florida

My HTC & Me
2020-09-11 18:00 - 19:00 (America/New_York)
A conversation with the University of Miami Hemophilia Treatment Center Team.

Do you have questions about your bleeding disorder? Maybe you understand what it means, from a laboratory or scientific point of view, to have Hemophilia or von Willebrand Disease.
BUT, Have you ever left a clinic visit, arrived home and thought: “Oops, I should have asked about……….” OR has a challenge or situation come up between clinic visits —- nothing urgent — Wouldn’t it be nice to talk it over with the HTC team?
Well, now’s your chance.

BDFF Live Broadcast: Challenge Accepted
2020-07-14 18:30 - 19:30 UTC
Join us for a screening of an original video series inspired by and made for the hemophilia community, followed by an open discussion about the everyday struggles of living with a bleeding disorder. Are you up for the challenge?
Topic of this video: Siblings and Bleeding Disorders
RSVP to info@bleedingdisordersfl.org for login information.
By RSVPing to this event you hereby grant the Bleeding Disorders Foundation of Florida (BDFF) and the Bleeding Disorders Coalition of Florida (BDCF) 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. This session is not being recorded. To be in compliance, we ask people working for industry attending this online program to disclose their position and the company they work for one time at the beginning of the session. You are not obligated to share any personal information. BDFF recommends using your first initial instead of your full name when signing on.

BDFF Live Broadcast: Challenge Accepted
2020-07-14 18:30 - 19:30 UTC
Join us for a screening of an original video series inspired by and made for the hemophilia community, followed by an open discussion about the everyday struggles of living with a bleeding disorder. Are you up for the challenge?
Topic of this video: Siblings and Bleeding Disorders
RSVP to info@bleedingdisordersfl.org for login information.
By RSVPing to this event you hereby grant the Bleeding Disorders Foundation of Florida (BDFF) and the Bleeding Disorders Coalition of Florida (BDCF) 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. This session is not being recorded. To be in compliance, we ask people working for industry attending this online program to disclose their position and the company they work for one time at the beginning of the session. You are not obligated to share any personal information. BDFF recommends using your first initial instead of your full name when signing on.
Thank you to Genentech.

Sports, Drugs & Rock N' Roll
2020-06-25 18:30 - 20:00 UTC
Mikey Berkman received a scholarship from BDFF and plays lacrosse at Syracuse. Listen to his story and how his experiences as a severe hemophilia playing college sports.
Please RSVP by June 24, 2020
Email: info@bleedingdisordersfl.org
Phone: 800-293-6527
Once you we have your RSVP you will be sent the instructions on how to login the day of
WEBINAR WAIVER AND DISCLOSURE
By RSVPing to this event you hereby grant the Bleeding Disorders Foundation of Florida (BDFF) 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. This session is not being recorded. To be in compliance, we ask people working for industry attending this online program to disclose their position and the company they work for one time at the beginning of the session. You are not obligated to share any personal information. BDFF recommends using your first initial instead of your full name when signing on.
Brought to you by CSL Behring

BDFF Star Search -- POSTPONED
2020-06-18 19:00 - 20:00 UTC
Join BDFF for an online variety show! We want YOU to get involved… sing a song, play an instrument, tell a joke… share your talent during this hilarious hour of heartfelt fun! Be creative with your talent, we want to see what you can do!
We are looking for a limited number of 2-3 minute talent acts for this online variety show of BDFF talent. This is your time to shine! And don’t worry, this is all happening from the comfort of your own home.
More info coming soon.
Contact events@bleedingdisordersfl.org if you’d like to be part of the show!
Sponsorships available. Contact leahnash@bleedingdisordersfl.org for information.

BDCF Legislative Webinar: Understanding the Committee Structure
2020-06-11 16:00 - 17:00 UTC
The Bleeding Disorders Coalition of Florida is hosting a webinar that will help you understand the committee structure. Nathan Schaefer with the National Hemophilia Foundation will lead an interactive session and give tips on getting bills through committees and which legislators to talk about bills such as step therapy and copay accumulators.
Please RSVP to info@bleedingdisorderscoalitionofflorida.org by June 10th for login information. This program is supported by Takeda.
WEBINAR WAIVER AND DISCLOSURE
By RSVPing to this event you hereby grant the Bleeding Disorders Foundation of Florida (BDFF), Florida Hemophilia Association (FHA) and the Bleeding Disorders Coalition of Florida (BDCF) 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. This session is not being recorded. To be in compliance, we ask people working for industry attending this online program to disclose their position and the company they work for one time at the beginning of the session. You are not obligated to share any personal information. BDFF recommends using your first initial instead of your full name when signing on.

Exercise and Your Joints Scavenger Hunt
2020-06-04 16:00 - 17:00 UTC
Understand the importance of exercise to maintain joint health. Discuss the various types of exercise, all exercise does not have to be strenuous. Exercise for all age groups. This online program will be led by Janelle Swartz, RN and Nurse Educator.
Please RSVP By June 3, 2020
Email: info@bleedingdisordersfl.org
Phone: 800-293-6527
Once you we have your RSVP you will be sent the instructions on how to login the day of the program.
Thank you to Octapharma for your support!

BDFF Family Trivia Night
2020-05-21 19:00 - 20:30 UTC
BDFF is hosting another fun trivia night with your favorite trivia master, Curtis Earth! RSVP to info@bleedingdisordersfl.org for login information.

Happy Hour
2020-05-14 16:00 - 17:00 UTC

BDFF Teen Talk
2020-05-07 16:00 - 17:00 UTC
Hey Teens! How are you dealing with COVID-19? We want to give you a safe space to chat about how you’re feeling through all of this. Do you like distance learning? Do you miss your friends? What do you miss most about life before COVID-19?
BDFF’s very own Natalie Rubin will be leading this talk. Natalie has been part of the BDFF community throughout middle and high school. She gets what it’s like to live with a bleeding disorder as a teen.
RSVP to info@bleedingdisordersfl.org for log in information.
By RSVPing for this event, you are allowing BDFF to use your image/likeness in BDFF promotions and outlets such as the BDFF website, Facebook/Twitter/Instagram pages, etc.

Happy Hour En Español
2020-05-05 16:00 - 17:00 UTC
La Fundación de Hemofilia de la Gran Florida te invita a
nuestro primer
Happy Hour en Español
Martes, Cinco de Mayo, 2020 a las 4 p.m.

Nuestro tema de discusion:
Activando A Nuestra Comunidad Hispana

RSVP a info@bleedingdisordersfl.org para recibir instrucciones de como conectarte

Bebidas opcionales ?. Te esperamos!

The Bleeding Disorders Foundation of Florida invites you to
our first
Happy Hour in Spanish
Tuesday, May 5th, 2020 at 4 p.m.

Our topic of discussion:
Engaging our Hispanic Community

RSVP to info@bleedingdisordersfl.org to receive instructions on how to connect

Drinks optional ?. We hope to see you there!

Self-Infusion 101
2020-05-01 16:00 - 17:00 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC | 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 UTC

*CANCELLED* Superhero Fun Walk Registration Party at Tampa Lightning Game
2020-03-28 06:00 - 21:00 UTC
**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 UTC | 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 UTC
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 UTC
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 UTC
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 UTC | 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 UTC
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
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 UTC | 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 BDFF Red Party
2020-01-18 18:00 - 21:00 UTC | 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
