FACTS N' FACTORS NEWSLETTER October 2017
Join us for a race the entire family can enjoy!  Run a 5K course, walk a quick one mile route, or cheer on the kids as they compete in the Monster Dash, a 100 yard fun run for ages 12 and under. Costumes are highly encouraged and you won't want to miss the pre-race Halloween party with a DJ, food, and more!

Sign up today and start fundraising! Funds raised will go toward fulfilling VHF's mission of supporting the needs of those impacted by a bleeding disorder through education, advocacy, and community.

5K |$30      Junior 5K | $15      Fun Walk | $10

UPCOMING EVENTS

October

* 6th - 8th - Teen Retreat at Camp Holiday Trails in Charlottesville.
 REGISTRATION IS NOW CLOSED.

* 12th -
Educational Dinner in Williamsburg. GO HERE TO RSVP.  

* 14th -
Celebrate Fall Community Event at Back Home on the Farm in Harrisonburg. GO HERE TO RSVP.

* 28th -
Trick or Trot 5K and Fun Walk at Robious Landing Park in Midlothian. GO HERE TO REGISTER AND START FUNDRAISING TODAY!

November

* 11th - Educational Lunch and Community Bowling Event in Newport News. GO HERE TO RSVP.

* 16th - Educational Dinner in Harrisonburg. RSVP Coming Soon.
EVENT WRAP-UP
EDUCATIONAL DINNER IN RICHMOND ON SEPTEMBER 14TH

Pat DeRatto | VHF Member

Did you know that you have a story to tell?  Each of us in the Bleeding Disorder Community has a story, an important story.  On Thursday, September 14th, 25 members gathered at the Hard Shell Restaurant in Chesterfield, for dinner and a course in how to tell your story presented by Marvin Poole, Senior Manager, US Patient Advocacy, Shire. With the policy issues facing our community, letting our legislators know what we need is essential. Although you may not think your story is powerful, it is more amazing than you realize. When telling your story, stick to the truth. Use your emotions and don't be afraid to share an unexpected story. Be sure to use language that your audience understands letting them know how it affects your family. Although it may feel silly, practice your story. It is very easy to get tongue tied when trying to explain to someone new how bleeding disorders affect your life and family. Having your story prepared and ready to go will allow you to jump into action when called upon. Grass-root efforts have long been effective in shaping public policy, especially with relation to health care and the issues we face. In short, know your story, practice it and be ready to share it. You and your story count. Thank you to our sponsor Shire.
FAMILY RETREAT AT GREAT WOLF LODGE ON SEPTEMBER 23RD - 24TH

Over 50 families came out to Great  Wolf Lodge in Williamsburg for our largest event yet. This was our 5th year and it just keeps getting better. On Saturday we had educational programs for kids, teens and adults and then on Sunday an educational breakfast for the whole family. Besides time with friends and family, the big hit was a photo booth sponsored by Colburn-Keenan Foundation, go here to see all the hilarious and fun photo strips . Thank you to everyone that attended, volunteered, donated a toy and sponsored the event.  Go here to see a list of sponsors .

Our family loved the opportunity to let loose at Great Wolf Lodge! Our family is grateful for the organizational leadership and sponsors of VHF. We were told that our daughter's diagnosis could limit her as an adult, but this weekend we learned her bleeding disorder doesn't have to define her or be an obstacle to her future thanks to the amazing speakers we heard from. If you asked our kids they would tell you the best part of the retreat weekend was reconnecting with their friends from camp, and of course the wave pool!"  Leslie Jameson | VHF Member

"We always have a blast having one on one family time not to mention reconnecting with friends we have made through VHF! Speaker  Scott Arizala, was very informative and engaging, opening our eyes on ways to help guide and educate our kids during different life stages, be it big or small. I really enjoyed the reminder to acknowledge good behaviors in the moment with genuine response instead of just pointing out the bad ones. I feel a lot of us are guilty of that without knowing it. Breakfast speaker, John Vieke, was so positive. He let you believe you could be/do anything regardless of your condition. It was nice for the kids to get reassurance to not be afraid of dreams no matter if you are told that you can't.  It was sad to see it end but knowing we will get to see these welcoming familiar faces again was bittersweet!"  Maureen Coventry | VHF Member

"What an awesome weekend at Great Wolf Lodge with VHF We couldn't speak any more highly of the organization and all they do for those in Virginia that suffer from or care for someone that suffers from a bleeding disorder.  Both presenters were wonderful, but if we had to pick, I think we enjoyed John  Vieke, Police Officer from Indiana the most. Hearing him tell his story of dreaming of working in Law Enforcement, to being told you won't be able to do it and then finding a way to triumph was inspiring. In the words of our four year old son, Clay, who suffers from Hemophilia A, Severe, "This was the best weekend ever!"  Michael Welshonce | VHF Member and Board Member
WOMEN'S NIGHT OUT IN RICHMOND ON SEPTEMBER 27TH

Sabrina Adams | VHF Member

On Wednesday, September 27th, VHF held a Women's Night out in Carytown. The evening included a food tour with River City Food Tours and an educational presentation "Insights on Healthcare Changes and Reimbursement " facilitated by Lynne Szott, National Reimbursement Manager at CSL Behring. The food tour started at Can-Can Brasserie with frites (French fries) and mussels. Other restaurants on the tour were 10 Italian CafĂ©, Home Sweet Home, Xtras, and the Tottering Teacup. My favorite stop was at Home Sweet Home where I enjoyed a yummy homemade tomato soup with a grilled cheese made with mac 'n cheese and brisket. The final stop of the food tour was the Tottering Teacup. There we were given a presentation regarding the Affordable Care Act. The presentation gave pertinent information about the law and key insights on getting and keeping medical insurance for young adults. A good time was had by all.  Thank you to our sponsor CSL Behring.
WAYS TO GIVE
Community Health Charities (CHC) is a nonprofit that raises resources for health and wellness charities by connecting employees to workplace giving campaigns. Join VHF and CHC to help raise awareness for those whose lives are affected by bleeding disorders. Ask if your employer participates in an employee giving campaign. 

If you are a Virginia state employee and you wish to direct your giving to VHF use the  Commonwealth of Virginia Campaign (CVC) code: 06043. Also, for CVC giving please count gifts made directly to VHF (i.e. registration fees, gift donations, or in-kind donations made to our fundraisers).  Report these direct gifts to CVC by going HERE.
Kroger Community Rewards makes fundraising easy..
Amazon Smile is a simple way for you to support VHF every time you shop, at no cost to you. When you shop at smile.amazon.com , you'll find the same experience as Amazon.com , with the added bonus that Amazon will donate a portion of the purchase to us. Share this link: http://smile.amazon.com/ch/54-1183181 and ask your friends and family to bookmark this link so all their eligible shopping will benefit VHF.


COMMUNITY RESOURCES
Study Yields Important Findings on the Functions of von Willebrand Factor

Researchers at the Boston Children's Program in Cellular and Molecular Medicine and the Harvard Medical School recently made important discoveries relevant to the functioning of von Willebrand factor (VWF). The study, "Flow-induced Elongation of von Willebrand Factor Precedes Tension-Dependent Activation," was published online, August 23, 2017, in the journal Nature Communications. Go HERE to read more.

Alnylam Reports Patient Death in Fitusiran Clinical Study

Alnylam Pharmaceuticals, Inc. has reported on the death of a hemophilia A patient who had been participating in a Phase 2 open label extension study for the company's investigational therapy fitusiran which is being developed for patients with hemophilia A and B, both with or without inhibitors. Go HERE to read more.
2018 OPEN ENROLLMENT
 

Open Enrollment for 2018 health insurance is right around the corner! Starting November 1, you can enroll, re-enroll, or change plans for 2018 through the Health Insurance Marketplace. Here's what you can do now to make the application process quicker and easier... 5 tips to get ready for 2018 Marketplace insurance:
VHF EDUCATIONAL SCHOLARSHIPS TO ATTEND NATIONAL MEETINGS
 
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.
  • HFA Annual Symposium - 2018 Symposium will be in Cleveland, OH on April 26-29, 2018 - VHF Educational Scholarship Application for 2018 Symposium is due November 1, 2017
  • NHF Washington Days in Washington D.C. - March 7-9, 2018 - VHF Educational Scholarship Application to attend 2018 Washington Days is due December 15, 2017
  • NHF Annual Meeting - 2018 Annual Meeting will be in Orlando, FL on October 11-13, 2018 - VHF Educational Scholarship Application for 2018 Annual Meeting is due March 12, 2018
MUSIC FOR THE CAUSE
 
Music for the Cause is holding it's first ever National Songwriting Contest and it's FREE to enter for those that have a bleeding disorder! There are two contests - one specifically for the bleeding disorder community and one for the general public. Both contests have a Grand Prize of $5000 and a chance to record in California! Go HERE to learn more.
HFA's DATELINE FEDERATION


NYLI REGISTRATION NOW OPEN

The National Youth Leadership Institute (NYLI) at the National Hemophilia Foundation (NHF) provides youth (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth and effect change. Applications are now being accepted and are due  Monday, October 31, 2017.  Go HERE to apply. For more information contact Marlee Whetten at mwhetten@hemophilia.org.