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Facts N' Factors Newsletter| October 2016
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The Virginia Hemophilia Foundation was recently awarded the prestigious Chapter of Excellence Award by the National Hemophilia Foundation in four separate categories.
Scoring in the top 15% of Chapters who participated in the review process, we are thrilled to have received this honor. We thank our legislators, treatment centers, stakeholders, families we serve, industry partners, and volunteers for helping us reach this great milestone.
NHF Partnership in recognition of our organization's participation in shared initiatives, trainings, and programs of NHF and our commitment to the relevance and vitality of our national chapter network as we work together to improve the lives of the bleeding disorders community.
Programs & Services
in recognition of our organization's commitment to serving individuals affected by bleeding disorders through education, community, care, and connection.
Advocacy & Public Policy in recognition of our commitment to advocacy and education initiatives both at the state and local level, aimed at improving the lives of those in the bleeding disorders community.
Board Governance & Leadership in recognition of our commitment to building strong, engaged, mission-focused leadership, paving the way for our organization's tomorrow, and helping us improve the lives of those in the bleeding disorders community.
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Welcome our 2016 - 2017 Social Work Intern
Shelly is a 24 year old first-year foundation student pursing a Masters in Social Work at Virginia Commonwealth University. She moved from Charlottesville, VA where she graduated from the University of Virginia with a Bachelor's degree in sociology. Shelly was very active in the Charlottesville community by serving three AmeriCorps State terms and one AmeriCorps Vista term which allowed her to gain experience working with children and families in various settings. She enjoys music, kickboxing, and taking care of her cat Pippa. Shelly is excited to learn more about the bleeding disorders community here in Virginia and will spend the year interning with the Virginia Hemophilia Foundation.
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Register by October 14th to be guaranteed an event t-shirt and to be entered into a prize drawing (winners will be announced at the event)!
The
Trick or Trot 5K and Fun Walk is a healthy and fun event that the entire family can enjoy. Join us to run a 5K course, walk a quick one mile route, or cheer the kids in a Monster Dash, a 100 yard fun run for kids 12 and under.
5K/Fun Walk teams and costumes are highly encouraged and you won't want to miss the pre-race Halloween party with a DJ, food, prizes for best costumes, and more!
Date: Saturday, October 29, 2016
Time: Registration/Party begins at 9:00 am | 5K/Walk begins at 10:30 am
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Upcoming Events October 2016
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Educational Brunch and Community Event - Roanoke
On Sunday, September 18th over 40 members of the bleeding disorders community joined together in Roanoke for an engaging talk on "Fighting Back with Fitness" by Kevin Harris and then we were treated to a gravity defying performance by Cirque Du Soleil.
Community member Krista Davidson had this to say "W
e had a lovely afternoon! It was really great seeing familiar faces, learning about how to keep your health by staying in shape, and seeing an amazing performance. My 3-yr old was mesmerized by Cirque Du Soleil! Thanks VHF!!"
Thank you to our sponsors Aptevo Therapeutics (formerly Emergent BioSolutions) and Soleo Health.
Go here for more event photos.
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Family Retreat at Great Wolf Lodge - Williamsburg
Debi Williford| VHF Member
September 24 - 25th almost 50 families with bleeding disorders were blessed to spend yet another awesome couple of days at the Family Retreat at Great Wolf Lodge in Williamsburg thanks to the generosity of VHF and our many sponsors. Our family was excited to be one of them and in fact my daughter Patti wanted to come so much that she made this her first trip home from college via foot, bus, metro, Amtrak and back by car, taking about 7 hours to get here on her own; so that tells you how popular and special this event is. I was also excited that another daughter and her family were able to attend for the first time and my seven year old granddaughter immersed herself fearlessly into it all!
This year as the adults listened to an excellent speaker the kids were divided up by age groups and from what I have heard they had a great time with their own activities; including the teens doing a mask project presented by NHF NYLI program, the kids a book " My Story of Resilience" by HFA, the youngest kids did crafts and playtime and when they all joined their families for dinner they seemed to be in good spirits!
Following a fun icebreaker for the adults the speaker spoke on the topic of the unaffected sibling which is a relevant topic; and it was presented very well! The parents were also given the opportunity to put their ideas on post-it notes on a board that the speaker then shared.
After a good dinner and social time some adults stuck around for an HFA Rap Session facilitated by VHF community member and board president Murai Johnson while others were excited to hit the water park for some wet fun!
Once the water park closed at nine many of the teens, adults, and a few kids that were wanting more fun and socializing (and were not ready to go to bed) made the arcade the next stop or hung out in one of the areas together throughout the lodge.
For us "night owls " the early " rise and shine" for breakfast on Sunday was not easy but again the speaker did not disappoint. He too was an excellent speaker that taught the kids and reminded the parents that having a bleeding disorder does not mean you can't follow your dreams and be successful in sports and life. He is a great example of perseverance in adversity and doing something you love to do in-spite
of it!
Lastly we packed up our rooms, checked out, and then those wanting more fun went back to the water park.
Patti headed back north to college, and the rest of our family, and a few other of our VHF families were among the last to leave when they closed the water park. No doubt many of the kids are already looking
forward
to the next time!
Thank you to our many volunteers, presenters, and sponsors.
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Educational Dinner - Richmond
Ann Kendall | VHF Member and Advocacy Working Group Chairperson
To enhance awareness, to motivate officials, and most importantly so that our unified voice is heard; this message, presented by Marvin Poole,
Senior Manager, US Patient Advocacy, Shire at VHF's "Legislative Advocacy" Dinner on September 29th, resonates deeply at this time of year. As temperatures begin to dip, it is an excellent time to reflect on our work as citizen advocates for the bleeding disorders community and examine the impact we can make as individuals and as part of the VHF team. While our conditions and those of our loves ones bring us together, it is our stories that legislators need to hear.
Relationships influence votes, much like dinner-table decisions influence who does the dishes. As a community, we have the opportunity to impact decisions simply by showing up to the table - during Advocacy Days, during Washington Days, and in between sessions when time is not as compressed. And much like the dinner table, a thank you goes miles towards providing a remembrance of an issue, and time well spent. Many thanks to our sponsor Shire.
Make sure to join us for our educational dinners this fall located throughout the state:
- November 10th, Harrisonburg, "Being More Active With Hemophilia" Go here to RSVP
- December 1st, Virginia Beach, "Sharing your Story" Go here to RSVP Go here to RSVP
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Community News and Articles
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Hemophilia Federation of America (HFA) Gears for Good
Paul Brayshaw | HACA and VHF Community Member
From September 23 - 25 I rode my bike 156 miles from Paw Paw, WV to Washington, D.C. with my father, a sister and her husband from abroad, and another sister and her boyfriend as part of Team Blood Riders. We were successful in overcoming this challenge in part by three days of sunshine and harmony among family and friends, and after we surpassed the required minimum fundraising requirement of $1000 per rider by over $1200. Total funds raised in 2016 for the
Hemophilia Federation of America (HFA) Gears for Good Bike Benefit total more than $128k.
We rode our bikes with courage along a car free historic corridor of the C&O Canal Towpath as part of the Gears for Good National Ride, and the saddle sores we endured were to help raise critical resources for the
HFA Helping Hands Program.
For five years, HFA has coordinated this bike benefit and every year the excitement surrounding this event has grown from a fledgling fundraiser to an important revenue stream. Funds raised help provide a lifeline for eligible individuals and families when in an emergency financial situation.
The Gears for Good Bike Benefit Rides in Connecticut, Ohio and the National Ride are annual events and planned to help respond to the incessant financial pressures related to the management of a bleeding disorder. In 2016, a plea to 'Bring a Friend' was bestowed on all participants for next year. What better way to spend quality time with someone you cherish then riding with them for several hours in support of the HFA Helping Hands Program.
There is still time to sign up for the Ohio ride! If 2016 is not your year, please consider riding, and/or donating in 2017 to help someone with serious financial need.
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VHF Educational Scholarship to attend National Meetings
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The National Youth Leadership Institute (NYLI) at the National Hemophilia Foundation (NHF) exists to provide youth (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others.
Applications are now being accepted and
must be completed by Monday, October 31, 2016 at 11:59pm EDT. Go here to download the application flyer OR go here to learn more. For more information contact Marlee Whetten at mwhetten@hemophilia.org (212) 328-3735.
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Personalizing Patient-Reported Outcomes for Hemophilia
In a recent paper, a group of experienced hematologists reviewed two tools used for assessing patient-reported outcomes (PROs). While standard modes of outcome measurement, such as annualized bleeding rate and joint health score, are relatively effective in evaluating larger groups of bleeding disorders patients, they are not designed to capture the unique healthcare needs, perspectives and goals of each individual. The need for a personalized approach for people with hemophilia is even greater in light of dramatic changes in the clinical landscape over the last two decades, including the proliferation of progressively safer and more effective therapies, and the availability of preventive treatment regimens like prophylaxis.
s standard, approximately 30% of hemophilia carriers have low factor levels, she said.
New Research Sheds Light on Disease Suppression
Researchers from the University of North Carolina (UNC) at Chapel Hill School of Medicine have published a new study suggesting that genetic material known as heterochromatin performs a key role in disease suppression. The study, "Direct Interrogation of the Role of H3K9 in Metazoan Heterochromatin Function," was published August 2016, in the journal Genes & Development. The new findings could have future therapeutic implications for conditions such as cancer and hemophilia.
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Upcoming Events Fall 2016
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