FACTS N' FACTORS
JUNE 2018
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Letter From The Executive Director
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Kelly Waters, LCSW, MSW | VHF Executive Director
It is hard to believe that June is upon us. What a crazy winter and spring we have had – summer in winter, winter in spring, and lots of snow and rain! The unpredictable weather has further heightened my awareness of needing to be flexible and open to possibilities. This flexibility and adaptability is important with the changing landscape within inherited bleeding disorders, which has included new therapies, new company names, concerns over access to health insurance and healthcare, and shifts in company funding priorities. But with change comes opportunities and the Virginia Hemophilia Foundation (VHF) is making plans for a bright future!
We are so excited about the contributions many of you have already made: either by participating in our 2018 Strategic Plan Survey, donating to the Red Tie Campaign, participating in the Round-Up Campaign at The Skinny Dip Frozen Yogurt Bars, serving on a committee, attending an event, writing letters and visiting with your legislators, or giving back at a fundraising event. We could not do it without you! Please continue to share your ideas and suggestions on how VHF can best be of service to you. And be sure to keep a look out for some new and familiar things over the next few months, i.e. VHF’s new Strategic Plan, Unite for Bleeding Disorders Walk, new locations for the Winter Gatherings, Giving Tuesday, and the Family Retreat at Great Wolf Lodge.
As always, I am honored to be partnering with you to make VHF a strong and vibrant organization. Thank you for all that you do to support VHF’s mission of serving and supporting the needs of those impacted by a bleeding disorder through
education
,
advocacy
and
community
.
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Cassaundra Ruth “George” Booth
June 12, 1984 – May 28, 2018
Cassaundra aka Cassie grew up with hemophilia, bleeding, bruises, factor, and ice pack as common words in her household. Her older brother, Chris, was a hemophiliac as well as three younger brothers: Eric, Patrick, and William.
Her adventurous nurturing spirit led her to embrace the challenges of the disease and she was always ready to apply first aid and give a word of encouragement. She served the larger hemophilia community often. She served as camp counselor at Camp Baker for several years and she also watched the children during VHF's annual meetings. Her experiences with the hemophilia community led her into a career working with special needs children.
She and her spouse, Adam Booth, resided in Winchester, VA. She is survived by her husband, Adam Booth, her parents Dwight and Kathleen George, her siblings Cherri Sparrow, Chris George, Cynthia George, Eric George, Greg George, Patrick George, William George and their families and extended families.
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Unite for Bleeding Disorders Walk Richmond
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Join VHF as we UNITE for Bleeding Disorders on October 28th in RVA! VHF is excited to announce that we have joined the National Hemophilia Foundation national walk program, Unite for Bleeding Disorders, and will host our inaugural event this fall. We hope to see many of our amazing friends and supporters there! Register today as a team or individual and raise funds for VHF and share your story with the larger community! Company and family teams are welcome and encouraged to participate.
More information on how to get involved will be shared in person at our upcoming Annual Meeting dinner on June 8th. As well, save the date for a fun Back to School Picnic and Unite Pep Rally September 8th at the Science Museum of Richmond!
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HACA/VHF Teen Advocacy Weekend
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Advocacy, Education, and Community Building in the Nation’s Capitol! A unique opportunity to spend time at the Hemophilia Federation of America (HFA) office, meet one-on-one with legislative staff and young professionals in the public sector, and take a guided tour of the capitol. Go behind the scenes of the political process and learn that YOUR voice matters.
Teen advocacy weekend is open to:
Teens age 13 and older with inherited bleeding disorders, their teen siblings, and teens of parents with an inherited bleeding disorder that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area.
Overnight accommodations will be provided Friday, August 3rd and/or Saturday, August 4th at the Hyatt Regency Washington on Capitol Hill. Space is limited so get registered today!
Friday, August 3rd:
City Sights DC Night Tour for the entire family
Saturday, August 4th:
Educational sessions at the Hemophilia Federation of America (HFA) office (Teens Only), Informal disscussions with HFA interns and young professionals in the public service sector (Teens Only), Educational Dinner for the Entire Family (Location TBD)
Sunday, August 5th:
Time to explore DC on your own!
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June
Newport News at the Marriott at City Center
July
Camp Holiday Trails in Charlottesville
August
Hyatt Regency Washington DC on Capitol Hill
August 9 - Educational Dinner (RSVP COMING SOON!)
Roanoke
First Landing State Park on Cape Henry in North Virginia Beach
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Educational Dinner in Richmond May 10
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Megan Schowengerdt | VHF Development Director
A group of several dozen VHF constituents gathered at the Short Pump Maggiano’s on May 10th for a delicious Italian meal and education on how factors work in the blood clotting process. Nurse educator Trish Underland brought the group a great understanding of these complex processes! Thanks to our sponsor for this educational event, Shire.
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Terry Lamb Batter Up Community Event May 19
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Megan Schowengerdt | VHF Development Director
Nearly 60 VHF constituents had a great time at our annual Terry Lamb Batter Up event at Tides Baseball At Harbor Park in Norfolk on May 19th! Thanks to our sponsors, CSL Behring and Diplomat Specialty Infusion, for making this event possible. Speaker Pete Dyson did a wonderful job encouraging kids in attendance to be BRAVE! VHF also recognized our Lyman Fisher Scholarship recipient this year, Chase Gardner. We also had a special visit from Norfolk Tides pitcher Tim Melville.
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Educational Dinner in Harrisonburg May 31
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Daniel Warren| VHF Board Member
Despite some stormy weather, a small group gathered at Vito's Italian Kitchen in Harrisonburg to learn more about Constructive Conversations. This quickly evolved into patients and caregivers sharing stories about the different ways they have taken command of their bleeding disorders through the years. Special thanks to Linda Pollhammer for leading the discussion and to Pfizer for sponsoring the evening.
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Advocacy Update - May 2018
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Becky Bowers-Lanier| HACA/VHF Advocacy Consultant
We have good news related to the 2018 General Assembly session! And the good news comes in at least three packages.
First, we had one resolution before the General Assembly,
HJ 16
, declaring that March 2019 and each succeeding year will be designated as Bleeding Disorders Awareness Month.
Del. Dawn Adams
carried the resolution for us. Dawn is a new delegate, having been elected in November 2017. She is also a nurse practitioner, and you can tell by the low number of our resolution that ours was the first piece of legislation that she carried. Dawn will be presenting us with our resolution at the annual meeting in Newport News in June. Additionally, she will serve as a panelist in our advocacy session at our meeting. On a personal level, Dawn is a colleague and friend of mine, and I’m thrilled that she gained a seat in the General Assembly!
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Welcome New Educational Consultants
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Both the UVA and VCU Hemophilia Treatment Centers (HTCs) have new educational consultants starting this summer. Educational consultants are a part of the comprehensive model of care that HTC's offer and UVA and VCU partner with a Hospital Education Program which is a state-operated program through the Virginia Department of Education. These programs provide a licensed teacher who is knowledgeable about the effects of coagulation disorders on young persons. These consultants serve as a liaison between the families, the treatment centers, and the children's home schools. They also advocate for the rights of young people with coagulation disorders and links patients/families with vocational services through young adulthood for optimal job training, education and potential.
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UVA's new team member is Robyn Evans.
"My name is Robyn Evans and I was born and raised in Atlanta, GA. I graduated from Emory& Henry College in 1996 with a double major in Psychology and French. My path began as a residential counselor at the Oakland School, a school for students with learning disabilities. This experience was transformative for me; it sparked something in me that I could not ignore and after two years, I knew I wanted to teach kids with disabilities. I went on to earn my teaching licensure, and then a Master’s of Education from Old Dominion University. I spent my first eight years teaching at Fluvanna Middle School, and then I transferred to Western Albemarle High School where I taught for the last ten years. While at Western I served as the Special Education Department Chair, School Based Intervention Team Chair, Testing Coordinator, and Transition Coordinator. I joined the Hospital Education Program in March 2018 as an educational consultant and have been so impressed with the work my colleagues do on a daily basis. It is a special place with special people who do special work, and I am proud to be a part of the Hematology/Oncology team. A few of my personal interests include traveling, cooking, woodworking, and being around as many dogs as I possibly can."
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VCU's new team member is Kristie Elrod.
"My name is Kristie Elrod and I am an Educational Consultant with the Richmond Hospital Education Program. I graduated from VCU in 2003 with an Undergraduate degree in Psychology and in 2007 with a Masters in Education. I have worked for the Hospital Education Program for fifteen years and I will start working with the VCU Center for Coagulation Disorders clinic in August. I look forward to meeting you and helping to navigate the education system together!"
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Fundraising Spotlight: The Nowlan Family
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We are so proud of the Nowlan family, who held a Facebook Fundraiser for Quinn’s birthday this month and raised $800! We had a Q&A session with Eileen to find out how they did it!
What inspired you to want to give back to VHF?
“VHF was there for us when we needed them most - a couple of years ago our ceiling caved in from a water leak and we were devastated and struggled to get money for the repairs. VHF offered to help and ever since then we've wanted to make sure we gave back so they can help others as well!”
How did you get started and get the word out?
“Starting the fundraiser was very easy. My husband started a fundraiser through Facebook for his birthday and asked all his friends and family to help support VHF rather than them giving him gifts or a party. Facebook allows you to set a goal and time-frame.”
Were you surprised at how much you raised?
“We were very surprised to see how much we raised. We set a goal of $500 and we ended up with $800! We plan on doing another fundraiser in a few months.”
Great job Nowlan family! We are so honored you chose to celebrate by giving back to VHF. For more information and to start your own fundraiser,
go here.
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HFA Blood Brotherhood Online Forum
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Blood Brotherhood is a national program for adult men, diagnosed and living with bleeding disorders. It is designed to be a multi-avenue outreach, to provide education and support, promote good health, and establish a sense of community for adult men. Their online forum is new and improved and is a private chat site restricted to only adult men with diagnosed bleeding disorders (ages 18+). Hemophilia Federation of America (HFA) has provided the Blood Brotherhood Online Forum since 2007 to enable adult men with bleeding disorders to share their experiences and connect with each other 24/7 from across the country.
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Victory for Women Website
Did you Know? National Hemophilia Foundation's Victory for Women website is the space to share your experience as a woman in the bleeding disorders community. Whether you’re a mother, daughter, sister, friend, relative, volunteer, or sibling you all have a story to tell. You can use Victory for Women as the place to keep the conversation going after a women’s event, share triumphs and struggles, give advice to other women in the community, gain encouragement and leave questions for our medical experts to answer. Express your thoughts through writing, recording audio or videos, displaying artwork/photographs or any other method that speaks to you.
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