Facts N' Factors e-Newsletter | November 2015

Ways To Give This Holiday Season

VHF strives to provide high quality programs and services such as a patient assistance program, educational scholarships, an annual meeting, summer camp, and more. In order to keep this all going we rely upon the generosity of our donors, volunteers, members, and partners. So as we approach this holiday season we ask you to consider giving back to the bleeding disorders community. 
 
There are many ways to give and some ideas include: 
  • Consider making a donation to VHF on December 1st also known as #GivingTuesday, a global day dedicated to giving.Since its founding in 2012, #GivingTuesday has inspired giving around the world, resulting in greater donations, volunteer hours, and activities that bring about real change in communities.
  • Purchase a Bravelet. Bravelets are beautiful bracelets inscribed with the words "be brave". A full $10 from the purchase of each Bravelet goes directly to VHF. Go HERE to see the VHF Bravelets page. 
  • Please consider bringing a toy donation with you to the next event you attend - VHF and Santa appreciate the help! Toy Donation Info: For either girls or boys, ages 0-12, nothing over $15, un-opened and un-wrapped.
 
Social Media

VHF operates and maintains its social media/networking sites as a community service to share information about issues, events, and programs and services that pertain to the bleeding disorders community. We would love it if you joined us so make sure you have liked us on Facebook, follow us on Twitter, and keep checking our You Tube page to see if we have added any new videos. 
 
Just as a reminder the following sites are the ONLY sites moderated by VHF staff:

Again our sites are provided for general information purposes only, and we do not engage in the practice of medicine or recommend particular treatment for specific individuals. If you ever see someone post a medical question on a social media/networking site let them know they can contact their physician, local hemophilia treatment center (HTC) or 1.800.HANDI (NHF's Information Resource Center)for more information.   

 

Considering the issues surrounding the bleeding disorders community, privacy is a huge concern. Social Media sites are publicly visible, easily searchable and just about any engagement is public information . We encourage all users of social media to share and engage with the community but to also be careful when posting personal information, especially concerning your diagnosis. Go HERE to learn more about how to make your Facebook account more secure. 

  

 
Get Involved

 
Upcoming Events
 

November 14  -  Educational Lunch & Community Event (Hampton) RSVP Closed 

November 18 -  Women's Night Out - Paint Nite Event (Richmond) RSVP

November 22 - VHF New Office Open House (Richmond) RSVP

 

December 8 - Educational Dinner and Community Event (Richmond) RSVP  

 

December 12 - Winter Gatherings (Charlottesville | Norfolk | Richmond)  

*See below for RSVP information 

 

Winter Gatherings
 














We invite you to join us at one of our annual winter gatherings. There will be food, fun, education, and holiday treats for all so please come whether you are young or just young at heart..

Saturday, December 12, 2015


*Open to All Members | 10:00 am to 1:00 pm*
AMF Kegler's Lanes | Charlottesville | RSVP by Friday, December 4th

*VCU Hemophilia Program Only | 9:00 to 11:00 am*
Ramsey United Methodist Church | Richmond
RSVP by Wednesday, November 25th | To RSVP call 804-827-3306 or email strunkek@vcu.edu

*Bleeding Disorder Program CHKD Only | 10:00 to 11:30 am*
Brickhouse Lobby at CHKD | Norfolk | RSVP by Friday, December 4th
 
  

 
Event Wrap-up
Educational Dinner - Virginia Beach
Sharon Moore | VHF Board of Directors

 









On Thursday, October 15th members of the bleeding disorders community attended a great dinner at Stinehilber's restaurant in Virginia Beach. Attendees learned a lot about managing pain during the "Pain Management 101" presentation given by Cathy Tiggs, a Social Worker from University Hospitals Case Medical Center in Cleveland, OH. It was great seeing familiar faces and a few new ones too! All ages were well represented from middle school age to adults. The speaker was AWESOME! We have attended other programs she has lectured at. She is very interactive and has a great love for the community and it really shows during her presentations. 

Pain management comes in many different forms, and is not a "one size fits all". Hydrotherapy, pain meds, physical therapy, and the good old stand by RICE are a few examples. Acute or chronic pain - or other descriptive words one uses to communicate pain are very important in treatment management. "Getting shot by an arrow" as one young man stated or "tingling" from another. Descriptions can help you and your doctor pursue an appropriate course of pain management. Sometimes stepping out of your comfort zone and seeing a doctor who specializes in pain management in addition to your hematologist might be the extra step needed for better pain control.

Stinehilber's was great! Thank you Ben Barker and Novo Nordisk for supporting this educational dinner for bleeding disorders community. Good food! Good info! Good friends! Great speaker! 

Go HERE to see more photos from the event. 

We hope that you join us at one of our upcoming dinners offered through out the state, go HERE to learn more.  
Trick or Trot 5K 2015 
Kelly Waters | VHF Executive Director

 
 








I have never been one for dressing up, but I must say I had a wonderful time wearing my witch costume last Saturday, October 31st for VHFs 1st Annual Trick or Trot 5K and Monster Dash. It was a beautiful, cool and sunny day at Robious Landing Park in Midlothian, where over 90 racers, walkers, sponsors, and volunteers helped to raise almost $29,000 for the Virginia Hemophilia Foundation.

Thanks to our hardworking 5K decorating committee for putting out straw bales, pumpkins, scarecrows, and ghouls greeted folks as they arrived. Highlights of the event included a costume contest - winners in the children's category included "the Bride of Frankenstein", Peter Pan, and "Kittens Who Lost Their Mittens"; adult winners were Freddy Krueger, Ivy, and an Angry Bird team. Other fun components were a DJ, Zumba led by Nicole Bailey, face painting, Rosie the Clown, and LOTS of seasonal treats from our race sponsors. It was so fun to see the kids participate in the Monster Dash. They all received "Finisher" candy bags and wood ghost medals created by Kevin O'Connor. 5K race participants also received "Finisher" candy bags and the winners received wonderful wood carved pumpkin awards also created by Kevin O'Connor. Special recognition went to Monika Eiden whose Team Lukasz raised over $900 and Sara Rakestraw who won the VHF Board Member competition by bringing 8 runners/walkers to the event. Thanks to all our sponsors, committee members, and volunteers for making this a SPOOKtacular event!

Go HERE to see more photos from this event (thank you to Frank Dowling for volunteering his talent and taking these great photos!)

Go HERE to see a listing of our generous sponsors.  


    


 
Community News and Articles
Students with special needs, such as hemophilia and other bleeding disorders, are at a higher risk of being bullied. Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or miss several days of school due to bleeding episodes.

Hemophilia Federation of America has compiled a great toolkit on bullying that you can find HERE
 
Infusion of Humanitarian Aid to Help Sustain Hemophilia Treatment in Developing World
Source: Joint press release from WFH, Biogen and Sobi dated October 12, 2015

The World Federation of Hemophilia (WFH) and its Humanitarian Aid Program announce an international pledge of donated hemophilia therapies, which is unprecedented in size . The donation will provide 500 million international units (IUs) of critically needed hemophilia therapy over a five-year span.

This initial wave of donations, currently arriving at hemophilia treatment centers across the globe, represent the first phase of an overall 10-year commitment made by Biogen and Swedish Orphan Biovitrum AB (Sobi) to generate 1 billion IUs of hemophilia therapies for humanitarian use. The countries currently receiving aid include Senegal, Kenya, Philippines, Dominican Republic, Uzbekistan, Jordan, Egypt, Morocco, Pakistan, El Salvador, Indonesia, Ghana, Myanmar, India, Sri Lanka and Nigeria.

Open Enrollment For Health Insurance Plans Through The Marketplace

If you don't have health insurance through a job, Medicare, Medicaid, the Children's Health Insurance Program (CHIP), or another source that provides qualifying coverage, the Marketplace can help you get covered.

Here are some important dates to remember (Go HERE for more info on dates/deadlines):
  • November 1, 2015: Open Enrollment started - first day you can enroll in a 2016 insurance plan through the Health Insurance Marketplace. Coverage can start as soon as January 1, 2016.
  • December 15, 2015: Last day to enroll in or change plans for new coverage to start January 1, 2016
  • January 1, 2016: 2016 coverage starts for those who enroll or change plans by December 15.
  • January 15, 2016: Last day to enroll in or change plans for new coverage to start February 1, 2016
  • January 31, 2016: 2016 Open Enrollment ends. Enrollments or changes between January 16 and January 31 take effect March 1, 2016.
You can apply for coverage 4 ways (Go HERE for more info):
  • Online
  • By phone
  • With in-person help
  • With a paper application 
Help is available! For more information about picking a plan you can:

  

Generation IX Community Leaders Project 
 
The Generation IX Community Leaders Project is a call to action for young adults (ages 16 - 30) that live with hemophilia B who want to put their skills to the test in an immersive leadership program. You will travel to Southern Florida, January 6-10, 2016. There, you will meet your Instructor Team, a group of leadership and teambuilding professionals with years of experience in the outdoor education field and the bleeding disorder community. Applications due by December 5, 2015. 
 

Baxter's BioScience is now Baxalta!

What's In a Name?
The name "Baxalta" reflects a renewed energy toward building an organization that is dedicated to improving the lives of patients around the world. A commitment to patients is at the heart of the company's strategy, values and behaviors. Baxalta's employees are part of a purpose-driven culture that encourages contribution of new ideas as well as close collaboration with patient communities. The company calls this energy the "Baxalta Spark."
 
A Vision That Inspires 
While the name is new, Baxalta's vision of Pursuing a Life Without Bleedscontinues to drive its work in hemophilia and other bleeding conditions. This clear vision inspires the kind of innovation that can lead to new therapies, the pursuit of scientific knowledge about bleeding conditions, and the development of close partnerships with the patients Baxalta serves to help foster a better understanding of their journey.

 
Save The Date
January 17-18 - Advocacy Training and Richmond Days (Richmond)
January 28 - Educational Dinner (Hampton Roads/Tidewater)

February 11 - Educational Dinner (Richmond)
February 20 - Educational Lunch and Community Event (Richmond)
February 24-26 - NHF Washington Days (Washington D.C.)

March 5 - Bowling For Bleeding Disorders Bowl-a-thon (Richmond and Chesapeake)
March (TBD) - Educational Dinner (Western Region)
March 16 - Women's Night Out (Hampton Roads/Tidewater)
March 19 - Dads in Action (Hampton Roads/Tidewater)
March 31- April 3 - HFA Symposium (Las Vegas)

757-705-1332

Thank you to our e-Newsletter supporter Baxalta  www.baxalta.com