Facts N' Factors e - Newsletter| February 2016


The 2016 Virginia General Assembly convened on January 13th and that means it's advocacy time for the Virginia bleeding disorders community. Scroll down to read more and thank you to Miriam Goldstein and Elsa Kendall for their wonderfully written recaps.

We have so much to be grateful for as we continue to grow our mission and serve and support the bleeding disorder community in 2016 and beyond. Go HERE to read VHF's 2015 - 2018 Strategic Plan. Please do not hesitate to reach out to Kelly at info@vahemphilia.org or 804-740-8643 if you are interested increasing your time/energy/talent with VHF in 2016. It's going to be a great year!

Another great way we strengthen and build our community throughout the year is through our various events and programs. Check out the "Get Involved" section of this email, go to our Upcoming Events Page, or scroll down to the "Save The Date" section at the bottom of this email.

Stay warm and we look forward to seeing you at an event soon!

Welcome to Our New Office Manager Melissa Hammack!    

Melissa is thrilled to be the newest member of the VHF team. She comes to VHF with 15 years of nonprofit experience, specifically choosing work that is meaningful to her; she is honored to be working for an organization she can already see is amazing. As Office Manager, she will utilize her administrative skills and attention to detail to help the office continue to run efficiently and smoothly so other staff can continue their work of growing VHF's reach.
Melissa is looking forward to getting to know members, volunteers, and everyone else involved in the mission and work of VHF.

 

 
Get Involved
Bowling for Bleeding Disorders
 
Saturday, March 5, 2016
   
2:00 PM to 4:00 PM
 
Two Locations: 

Get ready for our 4th annual Bowling for Bleeding Disorders in honor of Bleeding Disorders Awareness Month! Gather your friends and family and come out for an afternoon of fun, food, prizes, and bowling in support of Camp Youngblood at Camp Holiday Trails. 

Camp Youngblood is open to children with bleeding disorders, their siblings, and children of members of the bleeding disorder community. Kids enjoy a week of fun and learning with other kids that are faced with similar challenges. It costs VHF $600 to send a kid to camp for one week! Help us reach our goal of $30,000 this year by donating money, registering a team, or raising funds.

Educational Dinner February 11th
 
The Southerly Restaurant at Southern Seasons in Richmond, VA at 6:30 pm.            
The topic will be "Get Off Your Aspirations" - an inspirational presentation targeted for high schoolers through adulthood, and will be presented by life coach, health and fitness professional, and all-around motivator Vaughn Ripley.

RSVP to VHF by this Friday February 5th.

To RSVP go HERE!

Space is limited and priority will be given to those members that live in the Central Virginia region.

Upcoming Events

February 24-26 -   NHF Washington Days (Washington D.C.)

March 5 - Bowling For Bleeding Disorders

March 9 - Educational Dinner (Roanoke) RSVP Coming Soon!

March 19 - D.I.A. Family Event (Virginia Beach) RSVP Coming Soon!

March 31-April 3 - HFA Symposium (Las Vegas, NV)

 
 
Event Wrap-up
 
Richmond Days Wrap-up
Elsa Kendall | VHF Member
 

During Richmond Days I got to listen to lectures about important issues for people with Hemophilia. We also learned strategies and what to say. At the Capitol, we visited our elected officials and their aides to talk about these issues. Richmond Days was a great experience and I hope my class will come with me next year.


Advocacy Training and Richmond Days 2016 
Miriam Goldstein | HACA Member

Over 60 VHF and HACA members gathered in Richmond January 17 - 18th for the 2016 Virginia bleeding disorders Advocacy Training and Richmond Days. 

Activities kicked off on Sunday with advocacy training. Virginia Delegate John O'Bannon, a longtime sponsor of our advocacy efforts, stopped by with some encouraging words for our first-time and returning citizen advocates. Jennifer Guy (Director, State Government Affairs for the National Hemophilia Foundation) described how a bill becomes a law, and gave an overview of current trends in health legislation at the state level. Following Jennifer's presentation, Becky Bowers-Lanier (VHF/HACA Advocacy Consultant) and Karla Beckner White (Senior Manager of State Government Affairs, CSL Behring) reviewed the issues we would be discussing during the next day's legislative visits, and we engaged in some role-playing to practice.

This year, we had one overriding theme - safeguarding access to care - and two specific "asks" for our legislators. First, we would urge the General Assembly to take steps to "close the coverage gap" and expand Medicaid for hardworking, lower income Virginians who lack access to existing health insurance programs. While Virginia's Medicaid program covers the disabled, elderly, children, and pregnant women, most parents and all childless adults do not qualify for Medicaid coverage no matter how poor they are. Closing the coverage gap would provide health insurance to low-income adults who struggle to get the coverage they need to stay healthy and productive, when their jobs do not offer health insurance or do not pay them enough to afford coverage. Virginia needs to help these fellow citizens (and, incidentally, save money in the form of federal tax dollars already paid by Virginians!) by providing low-income adults with critically needed access to healthcare.

Thank you to our Advocacy Training and Richmond Days sponsors -   Go HERE to see a list of our 2016 sponsors. 
 
Go HERE to see more photos from this event.






 
Community News and Articles

March Declared Bleeding Disorders Awareness Month!

The National Hemophilia Foundation 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.




If you have been experiencing issues with your insurance company, Hemophilia Federation of America wants to hear your story!

Project CALLS [ Creating Alternatives to Limiting and Lacking Services] is an opportunity for you to share your story while helping the entire bleeding disorders community.Project CALLS is designed with a personal touch in mind. As a participant you will speak privately with a trained member of the HFA staff about your insurance issues.

Through your participation in Project CALLS, HFA will collect stories from the bleeding disorders community across the country, collate the data, identify trends, and use the information to build cases for change. Go HERE for more information.

 
Starting a Yoga Practice: A hemophilia perspective
Corey Pierce | Registered Yoga instructor and Longtime Member of the Hemophilia Community
 
Congratulations on deciding to attempt yoga! There is not a single person on this earth who could not benefit from a sustaiĀ­ned yoga practice in some form. I came to yoga because my calf muscles had atrophied (after an ankle fusion) and wanted to help rebuild my muscles. I have continued doing yoga because it has had a positive effect on nearly every aspect of my life, something I could not have predicted at the time.
 
What is Yoga?
Yoga is a holistic form of maintenance for your mind and body. Yoga is more than just coordinated postures linked with breathing; it is more than a gentle form of exercise. Yoga first originated thousands of years ago principally as a way of cultivating awareness in the body and mind. The postures and breathing that we associate with yoga are really just tools for guiding awareness into the body. While increased strength, resilience, and flexibility are often the goals of practicing yoga for the modern practitioner, it is really the byproduct or 'side effect' of awareness that is most in line with the origins of yoga. Other words striking at the heart of yogic practice are 'mindfulness,' 'consciousness,' 'alertness,' and 'understanding.' While you will no doubt improve your joint health by stretching and strengthening your joints through yoga postures (asana), it is the mindfulness and knowledge of your own body that will prevent you from the vicious cycles of injury.
 
Awareness and bleeding.
Physicians and medical personnel often ask about 'spontaneous bleeding.' By talking about injury in this way, medical professionals unintentionally reinforce a fallacious idea that bleeding is something that just happens to us. This is wrong, as it diminishes the responsibility of the person with the bleeding disorder. There is no such thing as a spontaneous bleed! There is always a bump, a twist, or stumble that precedes injury. The real cause of injury goes beyond hemophilia, which merely allows for the conditions of excessive bleeding. Only by creating greater bodily awareness, and spacial understanding of our environment, do we have the ability to prevent bleeding altogether.

Go HERE to continue reading.


 

In case you missed it VHF appeared in two articles in the National Hemophilia Foundation's Fall 2015 Hemaware magazine - Go HERE to read the current issue.

The first article was by our very own Executive Director Kelly Waters. She highlights the support that NHF has available for local chapters and how collaboration leads to more program offerings and better service. Go HERE to read the article.

The second article talked about the women and work life balance workshop that was offered this past year at our 2015 Annual Educational Meeting. This workshop was one of the many ways we have utilized the programs that NHF has to offer. Go HERE to read the article.



In Case of Emergency
Heather Conner | VHF Program and Communication Director

I learned something new this past month in a meeting with the VCU-HTC staff when we discussed resources, outreach, and support for the VA bleeding disorders community.
 
Did you know that you can set up your "In Case of Emergency" or "ICE" information on your smartphone? This is important because, in case of an emergency, medical responders can look at your phone, know any allergies or medical conditions you have, and know who to contact for you without having to unlock your phone. Information that can be accessed while the phone is locked includes things like name, date of birth, emergency contacts, and medical conditions.
 
Privacy Concerns
While most phone companies do not share any information you enter with third party apps, anyone who has physical access to your phone can easily see it. The whole idea is to make the information quick and easy to find for those helping you in an emergency, but that means it's also quick and easy to find for anyone with access to your phone.

Personal and sensitive medical information, such as medical conditions and medications, have the potential to be wide open to anyone who gets physical access to your phone. In addition, the phone numbers and names of your emergency contacts, and their relationship to you, will also be viewable. So you'll need to weigh the risks and benefits of having this information easily accessible via your phone. 
 
There's also the question of whether or not a first responder will know how to find your "ICE" information. While it is a good backup, you may also want to use other more traditional methods to alert first responders to critical medical information, such as a Medic Alert bracelet or wallet card. If you are interested in a medical emergency card for the bleeding disorders community and/or learning more about Medic Alert bracelets please email us at admin@vahemophilia.org for more information.
   
For more information on how to add your "ICE" information on your smartphone go HERE to read the article "How to Add an Emergency Contact to Your Phone's Lock Screen"


 

 
Scholarships

 
VHF Lyman Fisher Scholarship
 
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, 2016.   
   
   
HFA Educational Scholarships  
 
Each year, HFA awards scholarships to promising students in the bleeding disorders community. They are offering 4 scholarships for an increased amount of $2,000-$4,000 in three categories, Educational, Parent/Child/Sibling Educational, and Medical/Healthcare Services. Deadline April 30, 2016.   
  
For other scholarships offered in the bleeding disorders community check out these websites:


Educational Scholarship To Attend A National Meeting
 

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 bleeding disorders.

APPLICATIONS ARE DUE FEBRUARY 15, 2016.

Please note that we will NOT hold a drawing at our annual meeting in June for VHF families to attend the NHF Annual Meeting.


NHF's 68th Annual Meeting will be held July 21, 2016 - July 23, 2016 in Orlando, Florida at the Gaylord Palms Resort & Convention Center. There will be three days full of educational sessions, networking opportunities, and access to the exhibit hall. (Childcare for children under 17 years old available).
 
Go HERE To Learn More About the NHF Annual Meeting


www.drugcopharmacy.com  757-705-1332

 
Upcoming Events
    
April 7 - Educational Dinner (Hampton Roads/Tidewater)
April 9 - First Step - VA Living Museum (Newport News)
April 14 - Women's Night Out - Escape Room (Virginia Beach)
April 17 - Blood Brotherhood Event/ WORLD HEMOPHILIA DAY (TBD)
April 24 - Wine Tasting and Silent Auction (Richmond)
April 29 - May 1 - Teen Retreat at Camp Holiday Trails  (Charlottesville)
April 30 - Camp Youngblood Online Application Due

May 1 - Lyman Fisher Scholarship Application Due
May 5 - Educational Dinner (Roanoke)
May 14 - Spring Community Event - 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)