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FACTS N' FACTORS NEWSLETTER
August 2017
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LETTER FROM THE BOARD PRESIDENT
July 1, 2017 commenced the new year for the Virginia Hemophilia Foundation Board of Directors. This time of year is always bittersweet, as we must say good-bye to some Board members while we welcome new members and gear up for the year ahead.
This year, we must say good-bye to
Murai Johnson, who served on the BOD since 2009, including as Board Chair since 2015. Murai was a passionate, dedicated leader. Her personal and professional experiences and perspectives have been invaluable to the board! She and her family are a constant positive presence at events.
Kathy Mortimer also rotates off the BOD this year. Kathy was a Board member since 2009 and served as Treasurer since 2015. She was a strong leader on the Governance committee and very active in the recent re-write of our bylaws.
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Saturday, October 28, 2017 | 9:00 am
Robious Landing Park | Midlothian, VA
Join us for a race the entire family can enjoy!
The VHF Trick or Trot is a fun and healthy way to show your support for all those whose lives are impacted by bleeding disorders.
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.
Go here to learn more or click on the "Register Now" button below to get started!
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UPCOMING EVENTS
- 10th - Educational Dinner in Roanoke "To Treat or Not to Treat - That is the Question". GO HERE TO RSVP.
- 19th - Back to School Community Event at Go Ape! in Williamsburg. THIS EVENT IS NOW FULL. Go HERE to learn more and email admin@vahemophilia.org to be put on the waiting list.
- 24th - 26th - NHF Annual Meeting in Chicago, IL.
September
- 14th - Educational Dinner in Richmond. REGISTRATION COMING SOON.
- 23rd - 24th - Family Retreat Weekend at Great Wolf Lodge in Williamsburg. GO HERE TO RSVP.
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EDUCATIONAL DINNER IN WINCHESTER ON JUNE 8TH
On the evening of Thursday, June 8th, we packed the room at IJ Canns American Grille for an educational dinner program on "Managing Pain". The presentation was given by
Patricia Underland, Sr Clinical Consultant. Our families learned about the different sources of pain and how to document and describe the pain when reporting back to healthcare providers. A lively discussion ensued and it became apparent that this is a topic that hits close to home for many. Always consult with your healthcare providers with questions about managing pain. Thank you to Shire for sponsoring this informative dinner meeting.
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EDUCATIONAL LUNCH AND COMMUNITY EVENT AT VIRGINIA SAFARI PARK ON JUNE 10TH
Matthew Stone | VHF Member
It was a great, sunny and warm Saturday on June 10th as VHF families joined together for a safari adventure without even having to leave the state!
The day began with a walk through many exhibits where all types of animals live; monkeys, kangaroos, birds, and many more. Then we hopped on a tram that rode us all through the park to see all types of animals in the wild. We had feed buckets and every time the tram stopped we all made new furry friends thanks to all of those buckets! After the tram ride many of us went to see the giraffes. They had a special viewing building that brought you up right to the giraffe's face. Great time for a selfie!
After time at the Safari Park, we all headed over to the Natural Bridge Hotel where Sue Cowell from Bioverativ greeted us with lunch and a presentation on the importance of Genotyping. It was a nice break from the busy morning. After the presentation, those who still had more adventure left in them went back to the Safari to finish exploring the many exhibits. Thanks to Bioverativ and to Terry Stone and Michelle Stielper of Matrix Health Group for sponsoring this roaring fun family day!
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ANNUAL MEETING IN RICHMOND
Murai Johnson and Family | VHF Member
The VHF Annual Meeting took us full circle to the beautiful Wyndham Virginia Crossings Hotel, a location where we first met Kelly Waters, 11 years ago! The quaint atmosphere gave us many opportunities to spend both days with new and old friends. On Friday night, we fellow-shipped by the pool and on the patio with many families! Saturday was packed with information on government relations and health care presented by Michelle Rice, NHF's senior Vice President of Public Policy & Stakeholder Relations. For a change of pace, we transitioned into the progressive exhibits which are a 'speed-dating' style of learning about what each sponsor had to offer. It kept us on our toes (and filled with candy)!
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Camp Youngblood at Camp Holiday Trails
Amy Walker BSN, RN | VHF Member
What a great week at Camp Youngblood hosted by
Camp Holiday Trails (CHT) in Charlottesville. We all experienced camp magic from the youngest campers to the seasoned counselors and staff. Counselors and staff worked tirelessly to make the session extra special! Everyone enjoyed the crazy yet fun camp activities while making and renewing friendships. These important relationships at camp continue to make our community strong and caring.
Some fun facts from CHT about this years Camp Youngblood: Session 4 (Camp Youngblood) is CHT's largest camp of the season, there were 8 volunteers for this session (and a few were Camp Youngblood attendees not that long ago!) and 2 of the staff counselors this season are VHF members and Camp Youngblood alum, congrats Will George and Patti Williford on becoming counselors!
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THANK YOU ADVOCATES!
Becky Bowers-Lanier | VHF and HACA Advocacy Consultant and
Ann Kendall | Chair of the Virginia Advocacy Work Group
Emails, phone calls, postcards and office visits - the work of our VHF advocates.
We'd like to thank everyone for your efforts over this turbulent spring and summer in Congress; last week's dramatic twists kept us glued to coverage, and anxiously waiting for news from the Senate floor on our future insurance status as patients and caregivers. Regardless of our personally held political views, no matter how each vote turned out, changes would inevitably be felt by all. The work of healthcare reform is far from over - today we watch as another bill may make its way to the Senate floor, and news of a healthcare working group of the bipartisan, Problem Solvers caucus is making its way to headlines. As we move forward, we will continue to work with and follow the guidance of National Hemophilia Foundation and Hemophilia Federation of America in keeping our message clearly focused on patient protections: essential health benefits, no lifetime and annual caps and coverage for pre-existing conditions.
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HEMOPHILIA MEMORIAL
On September 16, 2017, a new memorial will be dedicated that will honor the lives lost to HIV/AIDS in the hemophilia community. Spearheaded by Jeanne White-Ginder, mother of Ryan White, and supported by the National Hemophilia Foundation (NHF); Hemophilia Federation of America (HFA); the Committee of Ten Thousand (COTT) and the National AIDS Memorial Grove, this will be the first permanent memorial erected to tragedy wrought on the hemophilia community by HIV/AIDS.
The Hemophilia Memorial will be supported by contributions only from individuals and advocate organizations. Click on the button below to learn more about the memorial and how to donate.
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INHIBITOR CAMP
Friday, Oct. 6th thru Monday, the 9th, 2017 at The Painted Turtle, Lake Hughes, CA. Comprehensive Health Education Services (CHES) Inhibitor Camp registration is now open. Inhibitor Family Camp is a four day experience designed exclusively for those in the bleeding disorder community who are living with inhibitors. There will be fun, adventure, and education - all in a sharing, supportive
atmosphere.
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NOW CONFERENCE
Bi-Annual NOW Conferences are scheduled for November 17-19, 2017 and May 18-20, 2018 in Phoenix, AZ at the Pointe Hilton Squaw Peak Resort.
Registration for BOTH Conferences is now open.
NOW is a national educational symposium for individuals and families who are living with von Willebrand Disease (VWD). It is a forum to learn about new medical advances, gain tools that can help you manage VWD, share with others facing the same or similar challenges, and learn from expert healthcare professionals who can best address the issues unique to VWD.
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NHF STEPS FOR LIVING SCHOOL TOOLKIT
On this toolkit resource page, you'll find resources that are specific to living with a bleeding disorder and others that are more general, but are applicable if you or your child will need accommodations to be a successful student.
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HFA RESEARCH
HFA launched its Research program following the completion of the CHOICE Project (Community Having Opportunity to Influence Care Equity). HFA ran the CHOICE Project through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) from October 2011 to September 2015. The CHOICE Project aimed to collect information on the health experiences of people who have a doctor-diagnosed bleeding disorder and do not receive care at a federally-funded hemophilia treatment center (HTC), though ultimately all community members could participate in the CHOICE Project, including moms with a child(ren) with a bleeding disorder.
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