 |
|
MARCH IS BLEEDING DISORDERS AWARENESS MONTH!
March is 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 YOU can help support Bleeding Disorders Awareness Month:
- Eat frozen yogurt (see below!)
- Follow @CDC_NCBDDD and retweet messages about CDC resources available to people with bleeding disorders.
|
|
|
EAT FROZEN YOGURT -SUPPORT VHF!
Stop by any participating store (go HERE for a complete listing) in March and "round-up" your purchase, and 100% of the proceeds will go toward supporting the VHF programs and resources that are so important to the bleeding disorders community in Virginia!
A special thank-you to the Bartko Family, for making this partnership possible!
|
|
|
RED TIE CAMPAIGN TO RAISE AWARENESS ABOUT BLEEDING DISORDERS
This March, during Bleeding Disorders Awareness Month, we at VHF are excited to partner with NHF to launch the 2018 Red Tie Campaign! This year, NHF is building upon the success of the fundraising goal from last year's
Red Tie Challenge to launch a new campaign that celebrates our advocacy and awareness-raising efforts and challenges our community to raise $25,000 to fight bleeding disorders. Our Virginia goal is $500, which NHF will match!
To participate in the 2018 Red Tie Campaign, you can:
- Sign: Join the fight to protect access to quality healthcare for people with bleeding disorders and for all Americans by signing the NHF open letter, go to RedTieCampaign.org to learn more.
- Give: Donate today or visit RedTieCampaign.org from March 1 - April 17 and click on "Donate". Don't forget to designate Virginia Hemophilia Foundation (VHF) as the recipient of your donation, and NHF will match gifts to VHF up to $500!
- Share: Follow #RedTieCampaign on Twitter, Facebook and Instagram, and create your own red tie style with NHF's customizable photo booth.
|
|
APRIL
MAY
- 1st - Lyman Fisher Scholarship Application Due
- 3rd - Educational Dinner - Journey of Factor (Richmond) RSVP COMING SOON
- 5th - First Step Program for New Families at Build-a-Bear (Virginia Beach) GO HERE TO RSVP
- 19th - Educational Dinner and Batter Up Community Event at Harbor Park (Norfolk) GO HERE TO RSVP
- 31st - Educational Dinner - Constructive Conversations (Harrisonburg)
|
HOPE BLOOMS SPRING FUNDRAISER
Tickets are going fast for our upcoming signature spring fundraiser, Hope Blooms! Celebrate the coming of spring with an afternoon of hope, renewal, celebration and inspiration at the beautiful
Boathouse at Rockett's Landing
in Richmond on Sunday, April 22nd. Attendees will enjoy delicious heavy hors d'oeuvres, drinks and an amazing live and silent auction plus fun games and raffles.
Some Highlights of this Year's Live and Silent Auction Include:
- A trip to Kitty Hawk, NC in August
- Tickets to Disney World
- A gorgeous diamond necklace pendant from Diamonds Direct
- A catered dinner for ten at your home with a personal chef
- Elton John concert tickets
- Private brewery tours, gift cards and swag
- And much, much more!
Celebrate Spring and Register Today!
Tickets are available for $75 a couple/ $40 single. Open to 21 and older.
|
|
CAMP YOUNGBLOOD AT CAMP HOLIDAY TRAILS
Camp Youngblood at Camp Holiday Trails | Sunday, July 8 - Friday, July 13
A week-long overnight camp for children with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community. Kids enjoy a week of fun and learning with others that are faced with similar challenges and life experiences. Applications due April 30th and there is a $25 application fee.
How to apply: Space is limited, go to www.campholidaytrails.org and click on the "Apply To Camp" button on the top right corner of the page.
For information contact Camp Holiday Trails: 434-977-3781 or
This camp is for members of the inherited bleeding disorder community that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area.
|
|
FAMILY OVERNIGHT AT THE VIRGINIA AQUARIUM
Crystal Morris | VHF Member
Family Overnight at the Virginia Aquarium Returned for 2018!
On February 2nd the night outside was dark and a bit chilly. Inside the Aquarium, the bright faces of families, and the warmth of the connections transcended the outside world into another realm.
Welcomed by the Aquarium and VHF and sponsored by Diplomat, Octapharma and Shire were several families within our bleeding disorder community to share in a night of education, community and fun.
The night included an informative presentation on Micro Bleeds given by Sue Geraghty, RN, who worked as the
Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center for 25 years. She offered a very knowledgeable, and engaging presentation. While the adults learned about Micro Bleeds the kids and teens learned about the blood clotting process through stories and crafts with the fun educational session, Blood Buddies, facilitated by Melissa Carper.
Families shared laughter and amazement as they scavenged through the Aquarium on a self guided tour in search of Shelly Turtle. The exhibits included of course the favorite sharks, sea turtles, stingray touching pond among various other variety of sea life. The children were able to meet and touch a real live horseshoe crab, and lizard. Morning brought more excitement with the splash of the river otters at the fresh water aquarium.
The ability to connect with other families, friends new and old in an unstructured relaxed atmosphere was fantastic and was a huge success!
|
|
WOMEN'S NIGHT OUT
Shannon Phelps | VHF Member
We had a blast at our ladies night out at the Motsie's Sea Grille where we had a huge dinner that was delicious. After dinner we walked over to Schakolad Chocolate Factory and heard
Kelly Gonzalez, MBA give a speech about "It is Ok to Not be OK". I must say she knocked it out of the park with how realistic and eye opening her speech was. She spoke about how it's OK to feel down in the dumps and the importance of talking and getting it off your chest. She also shared the high rates of depression for people dealing with bleeding disorders. After the talk we got to make chocolate roses and hearts! All in all it was a fantastic night! Thank you to our sponsors Bioverativ and Matrix Health Group.
|
|
EDUCATIONAL DINNER
Kendall Dean | VHF Member
On Thursday, February 15th, we were treated to an educational dinner, at Maggiano's Little Italy, located in Short Pump. I think it was the restaurant, that is a family favorite, that enticed my son to come. I knew Bayer's representative, Jack Schoff, would be there, and that was reason enough for me to attend! But also I wanted to learn more on the presentation topic, "Your Factor Fingerprint": Looking at Factors That May Influence Bleeding Rates in Hemophilia A Patients". During the presentation, Jared and I enjoyed the appetizers, salad, and choices of entrees, along with other members of VHF.
The presentation is a new one, and recently released from Bayer. Jack, our local representative, welcomed us all and introduced the presenter, Jennifer Harris, RN, BSN. Jennifer has worked for Bayer for five years as a Clinical Support Specialist, and previous to this she worked at a HTC in Atlanta. The Objective was to identify the uniqueness of bleeding frequency in Hemophilia A patients. Recognizing factors that influence an individual's bleeding patterns were the focus. Jennifer stated that she knew the hemophilia community was "all about education and an astute group of consumers". Her presentation covered deeper learning on genetics and environmental factors that can influence bleed rates, or ABR (Annual Bleed Rates).
It was a real treat to attend, and I want to thank Bayer for the presentation and delicious meal, and I am pretty sure my son Jared would like to say thanks for the cheesecake at the end!
|
|
BOWLING FOR BLEEDING DISORDERS FUNDRAISER
Megan Schowengerdt | VHF Development Director
Over 100 attendees gathered for a fun afternoon in celebration at AMF Sunset Lanes in Richmond on March 3rd! Participants in this fundraiser were gathering donations for Camp Youngblood at Camp Holiday Trails, where VHF sends up to 60 children each summer for a one-of-a-kind experience!
Our participants enjoyed pizza, cupcakes and visited with our sponsors in between bowling rounds. Team Markel and Team Lukasz, who both raised over $500, had their lanes decorated and had fun with glow swag and candy!
We were able to raise $3,024 through donations and our 100-yard dash raffle game the day of the event! The raffle donations collected went toward the National Hemophilia Foundation's Red Tie Campaign for Bleeding Disorders awareness month, $500 of which will be matched by NHF!
Congratulations to Our Top Fundraisers!
Top Individuals:
1.) Mari Droney: $700
2.) Monika Eiden: $560
3.) Virginia Mathurin and Mike Silva: tied at $450
Top Teams:
1.) Markel: $1,975
2.) Birdies, Pars and Strikes: $700
3.) Team Lukasz: $660
Altogether, participants and sponsors raised $34,899 before expenses for this incredible event! We are especially proud we exceeded our peer-to-peer fundraising goal for this event-raising over $8,000! Great job everyone!
We sincerely thank you for all your hard work raising funds and awareness to help us in sending kids to Camp Youngblood at Camp Holiday Trails this summer.
|
|
EDUCATIONAL SCHOLARSHIP TO ATTEND 2018 NHF ANNUAL MEETING IN ORLANDO, FL
VHF is pleased to offer Educational Scholarships for National Meetings. National Meetings enable our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most relevant developments in treatment and technology. It is the premier opportunity for networking and support for individuals and families affected by inherited bleeding disorders. Application Deadline for NHF Annual Meeting: March 12, 2018
|
Insurance plans may have renewed or changed with the new year. Are you running into roadblocks getting your factor product covered or faced other delays in treatment? If so, Project CALLS wants to hear about it. Project CALLS (Creating Alternatives to Limiting and Lacking Services) is an opportunity to share your story while helping the entire bleeding disorders community. Through your participation, HFA will collect stories from across the country, collate the data, identify trends, and use the information to build cases for change.
|
|
|
NHF HAS ANNOUNCED ITS 2018 INHIBITOR SUMMITS
The NHF Inhibitor Summits have been held for more than a decade, providing families affected by inhibitors with the education and support they often need as they face this serious complication. NHF will continue this tradition in 2018, by hosting three Inhibitor Summits:
- Thursday, June 14 - Sunday, June 17 in Miami, Florida
- Thursday, July 26 - Sunday, July 29 in New Orleans, Louisiana
- Thursday, August 16 - Sunday, August 19 in San Diego, California
|
|
|
RETROSPECTIVE STUDY REFLECTS SUCCESSFUL TRANSITION TO EXTENDED HALF-LIFE THERAPIES
Investigators at the Children's Hospital of Los Angeles (CHLA) recently published a retrospective review of patient clinical data, the findings of which reflect a series of largely successful transitions to extended half-life (EHL) therapies. The data was drawn from patients treated at CHLA's Hemostasis and Thrombosis Center (HTC).
"Clinical Use of Recombinant Factor VIII Fc and Recombinant Factor IX Fc in Patients with Hemophilia A and B," was published February 5, 2018 in the journal Haemophilia. The article's lead author was Guy Young, MD, Director of the HTC at CHLA. The results were also published as a poster abstract at 59th American Society of Hematology Annual Meeting and Exposition in December 2017.
|
|
|
END OF SESSION UPDATE
Becky Bowers-Lanier and Allie Atkeson HACA & VHF Advocacy Consultants
Last week the House and Senate named members to serve as conferees. These members will work together through the budget conference process to create the final 2018-2020 biennium budget.
The House's budget conferees include 4 new members*: Jones, Peace*, Knight*, Garrett*, Torian, and Sickles*. Delegate Landes was not reappointed as a conferee as he voted against the House budget because it included Medicaid Expansion. The Senate conferees remain the same: Norment, Hanger, Ruff, Newman, Wagner, Saslaw, and Howell.
With a $600M difference between the House and Senate budgets, the conferees will work to negotiate the final budget. The biggest difference is the inclusion of Medicaid in the House budget, which frees up dollars for other vital services like raises for state employees, teachers and law enforcement. The Senate has remained opposed to Medicaid expansion so it is unclear if the final budget will include the initiative. Last Friday, Governor Northam announced that he will
send down an amendment if the final conference budget does not include Medicaid expansion. The General Assembly will adjourn sine die on March 10th and will reconvene on April 18th to address the Governor's amendments to the budget.
|
|
|
|
|
|
