Facts N' Factors e - Newsletter| March 2016


March Is Bleeding Disorders Awareness Month

   
The National Hemophilia Foundation (NHF) announced that the US Department of Health and Human Services (HHS) has approved for inclusion on its National Health Observances calendar each March as "Bleeding Disorders Awareness Month" beginning this year. This special month aims to foster a stronger sense of unity and shared purpose among individuals in our community with all inheritable bleeding disorders, and elevate awareness and engagement in our journey beyond our community. Go HERE to read more.

Also go HERE to learn more about the Red Tie Challenge, a movement created by NHF to raise awareness about bleeding disorders.

Red Tie Challenge
Red Tie Challenge




The Hemophilia Federation of America (HFA) encourages member organizations and patients affected by a bleeding disorder to spread the word about Bleeding Disorder Awareness Month by posting messages on Facebook, Twitter, and sharing information with your family, friends, and community. Click HERE to follow HFA on Facebook, for the fourth year in a row, they will be posting daily bleeding disorders facts on social media to help you easily raise awareness among your family and friends throughout the month of March!


 

 
Get Involved
 

Sunday, April 24th, 3:00 pm at The Valentine

Come Make History With Us...

Flavorful wines expertly paired with hors  d'oeuvres by Mosaic Catering. Hemophilia history display, tour The Valentine Museum, live music by Church Hill Music Co. and you will not want to miss our popular raffle and silent auction. All this in an elegant, but relaxed setting in Downtown Richmond.

$40 per person | $75 per couple | GO HERE To Purchase Tickets

Please share our flyer and Facebook event!  
    

March and April Upcoming Events

   
March 5 - Bowling For Bleeding Disorders Fundraiser (Richmond and Chesapeake)
March 9 - Educational Dinner   RSVP (Roanoke)
March 20 -  Community Event at Topgolf     RSVP (Virginia Beach)
March 31- April 3 - HFA Symposium (Las Vegas)

April 7 - Educational Dinner   RSVP (Virginia Beach)
April 9 - First Step at VA Living Museum   RSVP (Newport News)
April 14 - Women's Night Out at Escape Room   RSVP (Virginia Beach)
April 17 - Blood Brotherhood Event at Escape Room   RSVP (Virginia Beach)
April 17 - WORLD HEMOPHILIA DAY
April 24 - Wine Tasting and Silent Auction   R SVP (Richmond)
April 29 - May 1 - Teen Retreat at Camp Holiday Trails   RSVP (Charlottesville)
April 30 - Camp Youngblood at Camp Holiday Trails - ONLINE APPLICATION DUE 
 

VHF Events at Camp Holiday Trails - Register Today!
 
 

Teen Retreat is April 29th to May 1st
Application Deadline: April 14th
Go HERE to Register

Application Deadline: April 30th  
 
Application Deadline: April 30th
 

 

 
Event Wrap-up

Educational Dinner - Richmond
Melissa Hammack | VHF Office Manager

The educational dinner at Southerly Restaurant in Richmond on February 11th was a wonderful evening with a great turnout. Vaughn Ripley, speaker, author, and athlete who also happens to be one of the longest living HIV/ hemophiliacs in the world, was our honored guest. The evening was an interactive time of inspiration, connecting with others, and of course, delicious food. The topic "Get Off Your Aspirations", challenged attendees to set goals in ways which are realistic and sustainable - with small, incremental changes. In this way, Vaughn explained, changes we make in all areas of our lives are more likely to be lasting and successful. 
 
Many thanks to Bayer for their sponsorship of this event!

Go HERE for more event photos. 
 
Educational Lunch and Community Event - Richmond
Ella Mortimer | Volunteer and Daughter of VHF Board Member

 
I had lots of fun at the Educational Lunch and Monster Truck Show. Marc Gilgannon gave a great talk while we ate a delicious lunch at the Richmond Marriott. He talked about how crucial exercise and eating right is to a healthy lifestyle. After lunch, we all walked to the Richmond Coliseum to watch the monster trucks race, jump, and fall apart. My favorite monster truck was the Monster Mutt truck that looked like a dog!

Thank you to our ticket sponsor DrugCo Health.

Go HERE for more event photos.


National Hemophilia Foundation Washington Days 2016
Ann and Elsa Kendall | VHF Members

 
From Elsa: Washington Days was a good learning experience for me. We learned what to say at the House and Senate buildings with our representatives. I got a red tie and at home, I tied it onto my hat! Tomorrow, is March 1. March is now Bleeding Disorders Month! I'm wearing my hat to school to show my class what I was doing in Washington, DC and my teacher is helping me make a power point presentation about it. I can't wait for next year!
 
From Ann: 350 people, one day, one destination, one cause - February 25, Capitol Hill, to raise awareness of bleeding disorders. As part of the Virginia Hemophilia Team, we covered the ground between House and Senate four times in just five hours - those 10,000 steps a great metaphor for the gauntlet that legislation must pass through at this time of year and the fortitude it takes to make an impact on legislators. But each step that those before us took paved the way to make March 2016 the first Bleeding Disorders Awareness Month and the launch of the Red Tie Challenge. Focusing a light on bleeding disorders is the first step to greater national awareness and support from elected officials and our communities-at-large - the Red Tie Challenge aims to do both by encouraging elected officials to show their support by wearing red ties we presented to them either during a one-minute floor speech, or posted on social media. Be on the lookout for your legislators to post, and be sure to share. Two more items rounded out our legislative agenda for the day: HR 3742, Access to Patient Assistance Programs and continued support of Federal hemophilia programs including HTC's (HRSA and MCHB) and the critical work of the CDC. HR 3742 (already supported by Virginia Rep. Hurt) needs more support on both sides of the House including a sponsor from the Senate-side; as such, this request was made of both our Virginia senators.
 
This was our family's first visit to Washington Days, one which we hope to repeat next year - but most importantly, the work of legislation is year-round effort and we will be adding our voices to support all families in Virginia affected by bleeding disorders. Our group may be small, but our collective voices are articulate and strong and we feel fortunate to be part of the Virginia Hemophilia community.

Go HERE for more event photos.  
 



 
Community News and Articles

Researchers Make Gene Therapy Breakthrough in Dogs with Factor VII Deficiency

Source: UNC Health Care news release dated January 20, 2016
 
In a recently published paper in the journal Blood, a team of researchers from the University of North Carolina (UNC) and The Children's Hospital of Philadelphia (CHOP) reported the successful application of gene therapy in dogs with factor VII (FVII) deficiency. This represents a significant advance, demonstrating the safety and efficacy of a novel therapy in large animal studies is a standard precursor to eventual clinical trials in humans. Go HERE to read more.


Intern With HFA This Summer!

Each summer, HFA hosts two college students/recent college grads to take part in their Policy and Government Relations Internship. These young adults work with HFA's Policy and Government Relations team to progress bleeding disorders advocacy at the local, state, and national levels. Go HERE to learn more. 

Florida Insurance Commissioner Fines Humana $500,000

Advocates welcome consent order to protect people livingwith HIV/AIDS, call for robust monitoring and enforcement of ACA non-discrimination provisions  

The Florida Office of Insurance Regulation (FOIR) announced this week that it had concluded its market examination of Humana and fined the health insurer $500,000 for failing to cooperate with investigators. In a consent order dated February 16, 2016, Humana agreed to "maintain procedures to ensure that it does not by effect or design treat people living with HIV/AIDS less favorably than any other condition." Health advocates from The AIDS Institute and the National Health Law Program (NHeLP) welcomed the news. Go HERE to read more.
 

New Videos and Content on Bleeding Disorders in the Workplace Now Available on Steps for Living Website

Bleeding Disorders in the Workplace: What Employers Should Know is a video resource that you can share with your employer to help educate him or her about bleeding disorders. It provides reassurance that having a bleeding disorder does not have to  interfere with your ability to do  your job well!



Go HERE to visit the Steps for Living website for other resources related to the workplace, including a new section on Job Choice.


VWD Workshop: Finding Our Voice in the Community

The Hemophilia Association of The Capital Area (HACA), invites you to a unique program just for VWD. Living with Von Willebrand Disease can pose some unique challenges like how do you let your concerns and needs be known? How can you tap into the many initiatives, national, and local, to improve your quality of life?
This program explores some of the psychological and social factors that may present barriers to achieving your best quality of life.

Go here to register: www://tinyurl.com/VWDWorkshop 
When: Saturday March 19th 11:00 am to 3:30 pm
Where: McCormick & Schmick's Harborside at Nat'l Harbor
145 National Plaza, Oxon Hill, MD 20745
Contact: Krystina Tucker, 703-352-7641, admin@hacacares.org 


www.drugcopharmacy.com  757-705-1332

 
Upcoming Events
 
May 1 - Lyman Fisher Scholarship Application Due
May 5 - Educational Dinner (Roanoke)
May 12 - Educational Dinner at Dave & Buster's (Virginia Beach)
May 14 - Educational Lunch and Event at Frontier Culture Museum (Staunton)
May 20-22 - Family Weekend at Camp Holiday Trails (Charlottesville)

June 4 - Batter Up Community Event - Harbor Park (Norfolk)
June 17 - 18 - Annual Education Meeting (Charlottesville)
June 30 - Educational Dinner (Winchester)

July 21-23 - NHF Annual Meeting (Orlando)
July 24-28 - World Hemophilia Foundation Meeting (Orlando)
July 24-29 - Camp Youngblood at Camp Holiday Trails (Charlottesville)