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Facts N' Factors Newsletter| June 2016
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Letter From VHF Executive Director
 As we get ready to close out VHF's fiscal year (July 1, 2015 to June 30, 2016) it is always nice to evaluate where we have been and where we are going. VHF's programs and services are continuing to grow. We have welcomed interns, new staff, and increased our volunteer base. Our programs/events are spreading out across the state, the number of programs are increasing, and individuals/families are actively participating. VHF has provided college, national meeting, and enrichment scholarships and helped families in financial need through the family assistance program. This past fall VHF's Board of Directors implemented a new
Strategic Plan to focus and guide our efforts over the next few years. We have already been hard at work tackling some of the projects. Go
here to learn more about the strategic plan.
Financial health is important to support VHF's strategic plan and our growing list of
programs and services. Thanks to your support our fundraisers have seen an increase in income, attendance, and enthusiasm. I hope to see you on October 29, 2015 for our
Trick or Trot 5K & Fun Walk! We also have had great success with grants to support our advocacy efforts, summer camp, patient assistance fund, current accounting support, and computer/equipment purchases. Our newest grant will be from the Colburn Keenan Foundation which will support our website redesign, creation of display materials, and the printing of our new brochure. Special thanks to Sasha (our 2015-2016 Social Work Intern) for drafting the well-received grant. Be sure to be on the lookout as we reveal VHF's updated logo, new brochures, and website redevelopment.
This has been a very busy time and the partnership with VHF staff/interns, board of directors, HTC staff, AND all of you are what ensures VHF's continues on the path of success in serving and supporting the needs of those impacted by a bleeding disorder through education, advocacy, and community. Thank you for helping make VHF so vibrant and strong.
Do not hesitate to contact me at
info@vahemophilia.org or (804) 740-8643 to talk more about what VHF is doing and/or what you would like to do to support VHF's work.
Kelly Waters, LCSW, MSW
Executive Director
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Summer Safety and Travel Resources
Travel is a normal part of life, especially during the summer months. The list of resources below is intended to give you a general overview and starting point
to help decrease worry and allow for happy and healthy travel for individuals with a bleeding disorder and their families. We have also included links to articles on staying safe in the water, helping your child plan to be away from home, as well as how to plan for weather related emergencies. Planning and preparation will provide the most efficient plan of care and as always remember to include your HTC staff in the planning process before traveling, moving, or starting a new physical activity.
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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. 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/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 begins at 9:00 am | 5K/Walk begins at 10:30 am
Location: Robious Landing Park
, 3800 James River Road,
Midlothian,
VA
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Upcoming Events Summer 2016
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U.S. FDA Approves CSL Behring's AFSTYLA®-- The First and Only Recombinant Factor VIII Single Chain Therapy for Hemophilia A
KING OF PRUSSIA, Pa. - 26 May 2016
- AFSTYLA is the first and only single-chain product for hemophilia A, specifically designed for long-lasting protection from bleeds with twice-weekly dosing available
- In clinical trials, patients undergoing prophylaxis with AFSTYLA experienced a median annualized spontaneous bleeding rate (AsBR) of 0.00
- AFSTYLA demonstrated a strong safety profile with no inhibitors observed in clinical trials
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Teen Retreat 2016 at Camp Holiday Trails
Will George | VHF Member
Hello my name is William George and I have severe Hemophilia A. I am 17 years old and have been attending summer camp at Camp Holiday Trails since I was 8. Each year in July VHF in partnership with Camp Holiday Trails hosts a week long session, Camp Youngblood, for children ages of 8 - 17 in the bleeding disorders community. This week long camp is one of my highlights each summer. Since 2013 there has been a new weekend program, Teen Retreat, that is dedicated towards teenagers age 13 - 17. The teen retreat is quite different from the regular week long session that is held during the summer. The teenagers are held to a higher expectation of maturity. This allows for the counselors and program directors to feel more at ease knowing that they have campers who can be self-accountable.
Teen retreat is filled with fun and informative team building exercises and each year has a different theme, this years theme was "Caution: Teens Working" and showcased different ways teens can be their best self through physical activity, leadership training, service learning, and more. During this most recent retreat we had a director of another camp come to teach us how to be counselors. She and her partner showed us the program that they use to help train young adults to be the best leaders possible. In this presentation they presented us with situations that made us think critically. They acted out scenarios of young campers who were shy and insecure, and even cases of adults who were acting like children. During this presentation all of the teens in the room were very responsive. Many came up with solutions to problems and they fixed situations by thinking as a group. During this brainstorm the director of Camp Holiday Trails was sitting in on the presentation. She and her staff were very engaged throughout the entire presentation and at the end she had some very nice words to say about the ability of the teenage campers to be leaders.
To conclude, Teen Retreat 2016 was filled with great exercises, both physical and mental, that allowed for an energetic and positive group of teenagers to grow under the guidance of great leaders. I know that I can speak for all who attended when I say that we are very grateful for the opportunity to be included in such a wonderful event #cautionteensworking. Thank you to our sponsors
Baxalta, Biogen, DrugCo, Emergent BioSolutions, Novo Nordisk.
Go here for more event photos.
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Educational Dinner - Roanoke
Davida Wickline | VHF Member
Thank you to our sponsor Baxalta and to VHF for the Educational Dinner in Roanoke, on May 5th. We had a great turnout for "The Importance of Joint Health" presented by Marc Gilgannon, PT at UVA-HTC. Joint Health is an essential part of living with hemophilia, and preventing joint disease is one of the most important issues with bleeding disorders. Bleeding in joints can cause hemarthrosis, joint destruction, muscle wasting, morning stiffness, chronic pain, and arthritis. Keeping active can help maintain healthy joints, strengthens muscles, ligaments, and tendons. Exercise enhances flexibility which can help maintain joint health. We should all strive to maintain a healthy weight which will decrease the amount of stress put on our knees. Did you know that every extra pound puts 4 times the stress on our knees? Choosing the right foods in proper portions can help maintain a healthy weight or even help us lose weight. Marc also talked about interventions that can be used when Physical Therapy does not improve a joint problem. There are non invasive and invasive options when treating damaged joints. The thing to always remember is to talk with your HTC concerning any concerns with your joint health.
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Educational Dinner at Dave & Buster's Virginia Beach
Patti Williford | VHF Member
On May 12, I attended an educational dinner at the Dave and Busters in Virginia Beach. The dinner was a buffet style with delicious Mexican cuisine. After dinner we had an informational presentation. The topic of the presentation was "Using Fitness to Fight Back". The speakers talked about what fitness is, the importance of fitness, and the benefits of fitness for someone with a bleeding disorder. They also gave information on ways to stay fit in order to prevent a bleed or with a bleed. The speakers then gave us workout bands and showed us some easy exercises we can do to help us stay fit. After dinner and the presentation, all who attended were given a game card to use throughout the giant arcade that offered fun games for all who attended. It was a great event and I think everyone who attended would agree. Thank you for giving me this opportunity! Thank you to our sponsor Emergent BioSolutions.
Go here for more event photos.
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Community Event at the Frontier Culture Museum
Sarahbeth Spasojevich | VHF Member
On May 14, VHF had an event at Frontier Culture Museum, a living museum in Staunton with reproductions of traditional buildings from the Old World and Early America. Thanks to our sponsors Biogen and Superior Biologics, around 50 persons were able to learn about the migration to Shenandoah Valley. An educational lunch presentation "Cracking the Code" covered how DNA works, and how it relates to those with hemophilia. After that, families were able to explore the living museum, see a blacksmith at work, and feed some geese and chickens!
Go here for more event photos.
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Family Weekend at Camp Holiday Trails
Dwight George | VHF Member
The weekend of Friday, May 20th through Sunday,May 22nd families from all over Virginia attended Family Weekend at Camp Holiday Trails in Charlottesville.
As the families gathered, they were greeted with a wonderful dinner, followed by a campfire which allowed the adults and kids to catch up with friends. Of course, no campfire is complete without the traditional s'more cookies, thus, setting the mood for a weekend of family fun.
The next morning after the families had a night's rest in the well-equipped modern cabins the real fun began. We were served a hearty breakfast, then each family was given the opportunity to participate in canoeing, fishing, and climbing the challenging rock wall. The well-trained, creative, and energetic staff at Camp Holiday Trails always find ways to ensure that we have the most fun possible.
This program allows for the bleeding disorders community to gather in a relaxing, safe environment where they can discuss the one thing that brings them together. Breakout sessions for the adults allow the parents to discuss the challenges and obstacles that they face. During these parental sessions, the children are being entertained through sports, games, or arts and crafts ensuring that the full camp experience is being achieved. On Saturday night a local musician, Jordan Perry,came to the camp to lead a sing along at the campfire. The staff, parents, and children all sang enthusiastically with Jordan and his acoustic guitar. It was truly a great way to conclude a weekend of growing and learning. During the closing ceremonies on Sunday morning, we gathered to express gratitude for being involved in a community like the Virginia Hemophilia Foundation. Many individuals referred to the community as a second family and as family we all grew as one. The 2016 Family Weekend was a great success and I speak for my family and many others when I say that we cannot wait until next time. Thank you VHF and CHT and to our sponsors Baxalta, Biogen,
DrugCo, Hemophilia Federation of America, Novo Nordisk, and Pfizer.
Go here for more event photos.
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Teen Education and Advocacy Day
Join VHF for Advocacy, Education, Community Building, and Adventure!
This teen weekend is open to teens age 13 and older with bleeding disorders, their teen siblings, and teens of parents with a bleeding disorder.
One parent/caregiver is required to attend Saturday night's dinner, Sunday's activities, and stay overnight with their teen (immediate family and household members are invited to attend dinner and Sunday's activities). There is no fee to attend.
Overnight accommodations will be provided at the Richmond Marriott, 500 East Broad, St. Richmond, VA 23219.
Saturday, August 6th
- Q&A with VA Legislators and Staff at the GAB (Teens Only)
- Lunch and Guided Tour of the VA Capital Building (Teens Only)
- Informal Meetings with Executive Branch Members (Teens Only)
- Educational Dinner for the Entire Family at Peak Experiences
Sunday, August 7th - For the Entire Family
- Educational Breakfast at the Richmond Marriott
- VHF Celebrate Summer - Community Event, an active and safe river adventure with Riverside Outfitters at Brown's Island
Go here to register.
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Community News and Articles
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Community Resource
SilverSneakers is a comprehensive program that improves overall well-being, strength and social aspects. It provides access to fitness facilities throughout the area- AT NO COST!- for patients over age 65 in a variety of Medicare health plans.
THERE'S A GOOD CHANCE YOU'RE ELIGIBLE
. Did you know 1 out of 5 people 65 and older are eligible for this fitness benefit? If you're a group retiree or part of a Medicare health plan, you may already have a SilverSneakers membership.
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SIPPET Study Results Published in NEJM
Source: New England Journal of Medicine, original article, published May 26, 2016
The detailed findings of the much anticipated SIPPET (Survey of Inhibitors in Plasma-Products Exposed Toddlers) study were published today, May 26, 2016. The study, "A Randomized Trial of Factor VIII and Neutralizing Antibodies in Hemophilia A," appeared in The New England Journal of Medicine. The lead investigator was Flora Peyvandi, MD, University of Milan.
Peyvandi and fellow investigators found that previously-untreated patients (PUPs) had a significantly higher incidence of inhibitors when treated with recombinant factor VIII (rFVIII) than those treated with plasma-derived factor VIII (pdFVIII) containing von Willebrand factor (VWF). Developing an inhibitor to treatment remains the most prominent and challenging complication for clinicians, occurring in approximately 30% of hemophilia patients globally.
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Member Spotlight
VHF member Chase Gardner was selected as All-Conference. He led his team in hitting batting average, on base percentage and did not make any errors in the field this season for Kempsville High School baseball team in Virginia Beach. He was recognized in the Virginian-Pilot on Sunday May 29, 2016 and will be recognized at the spring sports night on June 6th.
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Ways to Give
Amazon Smile
Amazon Smile is a simple and automatic way for you to support your favorite charitable organization (VHF) every time you shop, at no cost to you. When you shop at
smile.amazon.com, you'll find the exact same experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase to us. Choose
United Virginia Chapter of the National Hemophilia Foundation and
Amazon will donate 0.5% of the price of your eligible Amazon Smile purchases to us!
Kroger Community Rewards Program
Kroger Community Rewards makes fund-raising easy..all you have to do is follow the steps below, shop at Kroger, swipe your Plus Card every time you shop and VHF will receive the rewards! The Virginia hemophilia Foundation NPO number is 85417.
- Register online at krogercommunityrewards.com
- Have your Kroger Plus card handy and register your card with the VHF NPO #
- If you do not have a Kroger Plus card, they are available at the customer service desk at any Kroger.
- Click on Sign In/Register
- If you are a new online customer, click on SIGN UP TODAY
- Sign up for a Kroger Rewards Account by entering zip code, clicking on favorite store, entering your email address and creating a password, agreeing to the terms and conditions
- You will then get a message to check your email inbox and click on the link within the body of the email.
- Click on My Account and use your email address and password to proceed to the next step.
- Click on Edit Kroger Community Rewards information and input your Kroger Plus card number.
- Update or confirm your information.
- Enter NPO number or name of organization, select organization from list and click on confirm.
- To verify you are enrolled correctly, you will see your organization's name on the right side of your information page.
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Upcoming Events Fall 2016
November 3 - Women's Night Out (Richmond)
November 10 - Educational Dinner (Harrisonburg)
November 12 - Educational Lunch and Community Event (Williamsburg)
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