FACTS N' FACTORS
MARCH IS BLEEDING DISORDERS AWARENESS MONTH
Support Bleeding Disorders Awareness Month
March is Bleeding Disorders Awareness Month
and a great time to show support and raise awareness for the bleeding disorders community. Bleeding Disorders Awareness Month was approved by the U.S. Department of Health and Human Services as a National Health Observance in March 2016. This month aims to bring together people with inherited bleeding disorders to raise awareness of these rare conditions and their potential challenges.
How can you help support Bleeding Disorders Awareness Month?
- Follow @CDC_NCBDDD and retweet messages about CDC resources available to people with bleeding disorders.
So How Do You "Red Tie"?
Virginia Hemophilia Foundation Launches the 2017 Red Tie Challenge™
In March 2016, thousands of Americans nationwide showed off their best "red tie style" by participating in the first-ever Red Tie Challenge during the first-ever Bleeding Disorders Awareness Month. As a result, another "first" occurred: national awareness and understanding of bleeding disorders-like hemophilia, von Willebrand disease, and rare factors deficiencies. Equally as important, the bleeding disorders community finally had a symbol-the red tie-they could call their own and a movement they could rally behind.
Now that it is March, it's time to take out your red ties again as the Virginia Hemophilia Foundation (VHF) and National Hemophilia Foundation (NHF) partner to present the 2017 Red Tie Challenge. But the focus of this year's challenge will go beyond generating awareness to asking for donations to fund VHF and NHF's research, education and advocacy initiatives.
For over 40 years, VHF has been the leading fight against bleeding disorders in Virginia and, together with NHF-the largest nongovernment funder of research awards, fellowships and grants-we have advanced the standard of care and the quality of life for our community. To ensure we continue to have maximum impact, we are asking Red Tie Challenge takers to, as a first step, donate at RedTieChallenge.org directly to VHF.
Taking Red Tie Challenge is as easy as 1-2-3:
- Donate at RedTieChallenge.org.
- Get a red tie, then record and share your best red tie style with #RedTieChallenge.
- Challenge your friends to join you in the fight against bleeding disorders.
March is Bleeding Disorders Awareness Month! This is our community's time to shine and to raise awareness of the group of rare bleeding disorders! You can help by by sharing
Hemophilia Federation of America's
social media campaign
, updating your Facebook and Twitter profile images with their support ribbon, passing out their educational cards, taking part in their advocacy action of the day, and by hosting fundraisers!
With your help, HFA reached over 800,000 people in 2016 during Bleeding Disorders Awareness Month!
Spring Fundraiser and Silent Auction
Spring has sprung, so join us Sunday, April 23rd for "Spring on the Avenue" at the
Branch Museum of Architecture and Design
. This unique venue is an important historical and cultural landmark and the first museum of its type in the Southeast.
What to expect...
Live music, heavy hors d-oeuvres, a complimentary champagne cocktail & glass of wine or beer, access to the museum garden & exhibits, and our popular basket raffle and silent auction.
$40 per person | $75 per couple
Purchase tickets by clicking on the "Register Now!" button below.
Every summer kids and teens from around Virginia, whose lives are impacted by a bleeding disorder, enjoy a week of fun and learning with other kids that are faced with similar challenges and life experiences. Camp Youngblood is for children ages 7 - 17 with inherited bleeding disorders, their siblings, and children of members of the bleeding disorder community that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area. Camp is held at
Camp Holiday Trails
which is a caring community committed to empowering, encouraging and educating Campers with chronic illnesses, their families and healthcare professionals.
Online applications are due April 30th and camp will be held July 23-28, 2017.
There is a $25 registration fee.
Go HERE to download the flyer.
March - Bleeding Disorders Awareness Month
Women's Night Out
Advocating for Yourself as a Woman
" and private cooking instruction at the Culinary Institute of VA
- 25th - 26th - Adult Retreat at Hyatt House at Short Pump Town Center REGISTRATION CLOSED (Richmond)
- 20th - World Hemophilia Day Event come join us for a night of learning, imagination and inspiration in the World Hemophilia Day Science Lab at the Virginia Aquarium and Marine Science Center RSVP (Virginia Beach)
Educational Dinner - Richmond
Beth Leftwich | President-Elect, VHF Board of Directors
On Thursday February 16, the Virginia Hemophilia Foundation hosted an educational dinner to discuss the topic of "
Navigating Emergencies and Emergency Rooms". A highly interactive presentation was facilitated by
Jennifer Harris, BSN, RN, an educational nurse from Emory University Hospital in Atlanta, GA. The event had a great turn out that included many families. This allowed us to have a rich conversation about real-life emergency situations and how families affected with bleeding disorders have handled them. For example, we learned that many have found it helpful to have an "emergency bag" that contains your medications packed and ready to go. Other tips included getting to know your local emergency room staff so that you know what to expect from each during an emergency, and preparing for a vacation by familiarizing yourself with local emergency rooms in your destination and even asking your HTC to send them a letter just in case you have an emergency. Thank you to our sponsor Bayer.
Educational Dinner and Community Event - Norfolk
On Saturday, February 25th over 40 VHF members gathered at Bite Restaurant in Norfolk for "
No Sweat" an interactive and educational discussion on
the benefits of sports and exercise, how to choose and prepare for an activity that's right for you, and how to incorporate physical activities into daily life. Presented by Angela Forsyth, PT, DPT, an experienced physical therapist that has worked in the bleeding disorders community for many years. She did an excellent job of keeping this all-age group engaged and participating throughout the meal. After dinner we all walked across the street to the Scope Coliseum for an evening of hockey with the Norfolk Admirals. Their mascot Hat Trick and recognition of our group over the loud speaker, were the highlights of the night! Thank you to our sponsor Diplomat Specialty Infusion Group.
Bowling for Bleeding Disorders Fundraiser - Chesapeake and Richmond
We were thrilled by the turn-out at our 5th Annual Bowling for Bleeding Disorders Fundraiser in support of Bleeding Disorders Awareness Month.This year saw nearly 200 bowlers spread over two locations (Chesapeake and Richmond). Competition was fierce as teams worked to meet our goal of $5000 in individual donations. We exceeded our goal and had our best year yet raising over $39,600. THANK YOU to everyone that participated, sponsored, volunteered, and donated!
Thirty-eight teams comprised of community members, family and friends came together to help raise much needed funds that will send kids to Camp Holiday Trails. Attendees were treated to pizza, sodas, desserts, t-shirts, and the chance to win door prizes generously donated by several sponsors. The event continues to grow and several teams did an excellent job with getting peer-to-peer donations. First place goes to Team Pins and Needles who raised an all time high of $2475 (thanks to the Bordone family and Heather Brinkley for all their efforts). Second place was Team Super Clay/Welshonce family who brought in $940.
In third place with $915 was the Spazvengers/Spasojevich family. Although they weren't able to attend this year they did not want to miss out on the chance to raise money for their favorite cause.
Fifth place was QiQi's Champs/Cartwright family with $535, and sixth place goes to Bing Dynasty/Cady family with $250. Also a big thank you goes out to our 50/50 raffle winners at both locations, the Wheatley family and Jason Valentino, for donating back a portion of their cash winnings to VHF.
Many thanks to our committee members and volunteers:
Mike Welshonce, Donna Bordone,
Zack Bordone, Sara Cheeks, Nicolai Creatore, Nicole Bailey, Stacey Noble, Megan Lawson, and Sasha Jean-Noel. Many thanks to the generous industry partners who sponsored this event and came to show support.
Virginia Advocacy Report 2017
Becky Bowers-Lanier | VHF/HACA Advocacy Consultant
The 2017 General Assembly session is now history, with adjournment on Saturday, February 25, 2017. It was a fast and furious 46-day session, and we punctuated it by our own Advocacy Training and "Richmond Days" on Monday, January 16th. Many thanks to all of you who came to the advocacy training on Sunday, the 15th, and stayed for visits at the General Assembly Building on the 16th! Your presence means so much to our community, and I cannot thank you enough for that.
As I indicated above, the General Assembly session is over. One final job remains, and that will occur on Wednesday, April 5, when legislators return for their "reconvened" session. In that one-day session, legislators will review the Governor's recommendations on bills (these are usually technical in nature) as well as the bills he vetoes. Overriding a gubernatorial veto requires a 2/3 vote in both the House of Delegates and the Senate-a hard hill to climb since neither house has a 2/3 Republican majority. Keep your eye on the newspapers to read about proposed gubernatorial actions.
A Former Senator Explains How Regular People Can Effectively Lobby Congress
Byron Dorgan spent 30 years representing North Dakota in Congress - 18 years in the Senate and 12 in the House. And there's one constituent he thinks of when people ask how ordinary people can effectively lobby their representatives. She was a determined woman whose fight to help her son eventually changed how American health insurance works.
Dorgan told me this story a few weeks ago, when I was working on a piece about the Affordable Care Act's ban on
lifetime limits in health insurance
. Next week, as legislators return to their districts for recess and town halls, his advice might prove especially relevant. As David Leonhardt
for the New York Times, those meetings will be "a chance for people to make clear the actual stakes in the health care debate."
Scholarship Opportunities for the Bleeding Disorders Community
The Virginia Hemophilia Foundation's (VHF) Lyman Fisher Scholarship was established to honor Dr. Lyman Fisher, a teacher, researcher, and clinician in hemostasis who for many years directed the adult hemophilia program in Virginia. Applicants must have participated in VHF activities and live in the territorial jurisdiction of VHF. Scholarships are one-year awards in the amount of $2,000 for a full academic year.
Application deadline is May 1, 2017.
Other scholarships offered in the bleeding disorders community:
My Life, Our Future Research Repository Opens to Scientists on Rare Disease Day
Recently, Rare Disease Day marked the opening of the My Life, Our Future Research Repository to scientists.Thanks to your participation, our community has created the world's largest genetic hemophilia repository, a collection of samples and data from more than 5,000 participants, enabling researchers to further understanding about the disorder. Together, we are one step closer to scientific breakthroughs for our community that will impact generations to come.
You can read more about this exciting announcement HERE.