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FACTS N' FACTORS NEWSLETTER
November 2017
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WAYS TO GIVE
The Virginia Hemophilia Foundation (VHF) strives to serve and support you with education, advocacy, and community building programs that are of high quality and meet a variety of needs. We hope that you have joined us this past year at an event or are considering participating in the near future. Visit our website to see more about the programs and services that we are so proud of.
To maintain the diverse and successful programming of VHF we need your help! Please consider participating in #GivingTuesday on November 28th and donate to VHF in this annual "Day of Giving".
Since its founding in 2012, #GivingTuesday has inspired giving around the world, resulting in greater donations, volunteer hours, and activities that bring about real change in communities. Go here to learn more.
Here is what member Elsa Kendall has to say about the importance of volunteering and donating to VHF "On October 24th, I volunteered at the VHF office. It is meticulous work to run an organization such as VHF and have all the details of which company is doing what in an organized fashion. We need volunteers to help with events like the recent Trick-or-Trot. Although we were staffed fairly well, other times we won't be. We need your help to volunteer at these events. Also, we need donors. This is a non-profit organization with a small amount of members, we can't survive without donations. Whether it's your time or money, you have the power to supply it and help our cause. We have been able to do things like Richmond Days, Washington Days because of your services. Please continue to do that and help us grow and become known in the Richmond community. Thank you for your contributions!" Thanks for your service Elsa!
Other easy ways to give back and make a difference in the lives of someone with a bleeding disorder include:
- You can make a tax deductible donation to VHF anytime by going to our website www.vahemophilia.org and clicking on the green "Donate Now" button OR you can mail your donation to VHF at 410 N. Ridge Rd., Suite 215, Richmond, VA 23229 (make checks payable to Virginia Hemophilia Foundation).
- Purchase a Bravelet. Bravelets are beautiful bracelets inscribed with the words "be brave". A full $10 from the purchase of each Bravelet goes directly to VHF. Go here to see the VHF Bravelets page.
- Amazon Smile is a simple and automatic 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 exact 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 donors, volunteers, employees, and friends to bookmark this link so all their eligible shopping will benefit the Virginia Hemophilia Foundation.
- Kroger Community Rewards makes fund-raising easy..all you have to do is register your Kroger plus card here, add the VHF NPO # 85417 to your account, shop at Kroger, swipe your Plus Card every time you shop and VHF will receive the rewards!
Kelly
Kelly Waters, LCSW, MSW
Executive Director | Virginia Hemophilia Foundation
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WINTER GATHERINGS
Come celebrate the winter season with your Hemophilia Treatment Center (HTC) staff and Virginia Hemophilia Foundation (VHF) community. There will be holiday treats, education, and good times with your friends and family!
The VCU - HTC (Central Region) and CHKD - HTC (Eastern Region) events are limited to those with an inherited bleeding disorder and their immediate family and/or household members that are patients of the HTC. The Western Region gathering is open to the entire Virginia inherited bleeding disorders community. There is no fee to attend and space is limited.
Location and Time:
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UPCOMING EVENTS
November
11th - Educational Lunch and Bowling Event in Newport News. Event RSVP closed.
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TEEN RETREAT WEEKEND AT CAMP HOLIDAY TRAILS
Just over 15 teens gathered together October 6th - 8th for a weekend of fun and learning at
Camp Holiday Trails. This annual event is a chance for teens to connect and create a strong sense of community!
This retreat is for ages 13 to 18 with inherited bleeding disorders, their siblings, and teens of members of the Virginia inherited bleeding disorder community (i
n partnership with the Hemophilia Association of the Capital Area (HACA).
Throughout the weekend the teens were treated to a variety of education and physical fitness sessions with plenty of time for traditional camp activities.
Thank you to our sponsors Aptevo, Bayer, Bioverativ, DrugCo Health, Hemophilia Federation of America, Hoos at Home, National Hemophilia Foundation, Novo Nordisk and Shire.
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EDUCATIONAL DINNER IN WILLIAMSBURG ON OCTOBER 12TH
On Thursday, October 12th a small group of friends and families gathered in Williamsburg, VA for an Italian dinner and talk focused on Home and Self Infusion. Patricia Underland, Senior Clinical Consultant, shared steps on helping with infusions, such as making infusion time as relaxing as possible, avoid rushing, being well hydrated, and finding a place that is comfortable and well lit.
Thank you to Shire for sponsoring this "Hello Talk".
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CELEBRATE FALL COMMUNITY EVENT IN HARRISONBURG ON OCTOBER 14TH
Ethan, Allison, Gary and Crystal Morris|VHF Members
October 14th was the perfect day for VHF's Celebrate Fall Community Event. After a dreary rainy week, the sun came out just for us. The event kicked off with a delicious meal prepared by Back Home on the Farm, followed by a very educational, hands-on and sweet activity presented by Melissa Carper. She creatively engaged us with an explanation of how our blood works and the four main components. We then enjoyed a leisurely covered wagon ride to a colorful pumpkin patch where we chose from a variety of different pumpkins and gourds. There were so many shapes and sizes to choose from everyone picked their very own special pumpkin.
The farm itself was full of activities to enjoy from adorable pig races, visiting with furry farm friends, to family fun games of tug of war and bowling, mini golf and a corn maze. We really liked the buried slide, the antique carousel and the "Aggtastic" area that explored agriculture, and environmental topics. We really had a great time, but that isn't too much of a surprise, we haven't attended an event within the community where we didn't have a great time. It was good seeing old friends and meeting new ones. Many thanks to all who contributed and coordinated this year Fall Celebration, we had a great time.
Thank you to our sponsor Diplomat Specialty Infusion Group.
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TRICK OR TROT 5K AND FUN WALK FUNDRAISER
"For the past three years in October VHF has been hosting the Trick-or-Trot 5K and Fun Walk, a Halloween fundraiser at Robious Landing Park in Midlothian. The event includes a 5k run, a one-mile walk, and multiple games and activities. You may dress in your selected outfit of choice, or in your Halloween costume. In the past there have been t-shirts and bags full of tzocthkys from each of the main medical product companies. I have attended the event for the past two years and have greatly enjoyed the experience. Halloween is always a fun time for me, and this has expanded the celebrations even farther!" Elsa Kendall, VHF member
Thank you to everyone who came out in support of our 2017 Trick or Trot 5K and Fun Walk!
We had over 150 registered runners and walkers and raised over $31,000 for the Virginia bleeding disorders community. This event continues to grow and we look forward to seeing you next year for our best Trick or Trot yet.
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HEMOPHILIA MEMORIAL AT THE NATIONAL AIDS MEMORIAL GROVE
On my recent trip to San Francisco I had the honor of visiting the National Aids Memorial Grove that is located in the G
olden Gate Park. I found it to be a beautiful, healing, and peaceful space that is dedicated to the millions of Americans affected by AIDS.
As I stood there and breathed - the stillness of the circle, the smell of the woods, and the gentle embrace of the space (trees, stones, wind) lent comfort to me. The newly built Hemophilia Memorial Circle is inscribed with names of "those who died; those who loved them; and will forever honor their lives".
I am proud that Virginia Hemophilia Foundation, a strong advocate and supporter, will be inscribed in the memorial over the next month as part of the World AIDS Day ceremonies on December 1st. To learn more about this incredible tribute (including having a name inscribed)
go here to visit their website.
If money is a barrier to remembering and honoring your loved one please do not hesitate to reach out to VHF to explore financial assistance resources.
Kelly
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OPEN ENROLLMENT FOR ACA HEALTH INSURANCE BEGINS NOVEMBER 1ST
Sign-up for ACA marketplace ("Obamacare") plans runs from November 1 to December 15 for insurance coverage that begins on January 1, 2018. The Health Insurance Marketplace is for people who don't have health coverage. If you don't have health insurance through a job, Medicare, Medicaid, the Children's Health Insurance Program (CHIP), or another source that provides qualifying health coverage, the Marketplace can help you get covered.
What you pay for insurance depends on your income
Your savings depend on your expected household income for the year.
You can apply for coverage 4 ways
- Online
- By phone
- With in-person help
- With a paper application
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ADVOCACY IN ACTION
Krista Davidson | VHF Member
I attended a reception for Ralph Northam in Roanoke on October 29th, his guest was Tim Kaine. After meeting these two, I thanked them for their support of the ACA and how important it was to our community.
Last week I spoke with our Advocacy Working Group Chair, Ann Kendall,
she updated me on the joint statement on the Alexander-Murray Bill. NHF, HFA, the Coalition for Hemophilia B, and the Hemophilia Alliance have joined together to endorse the Alexander-Murray Bill, a market stabilization bill recently released by Senators Lamar Alexander (R-TN) and Patty Murray (D-WA) go here to read more. Kaine and Warner had not signed on so far so I asked Kaine his thoughts about it and essentially he is in support of the bill.
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You and a family member or caregiver are cordially invited to join CSL Behring for Common Connections: An AFSTYLA Story!
Thursday, December 7, 2017 | Check-in
6:30 PM | Presentation 7:00 PM
Travinia Italian Kitchen & Wine Bar | 2075 Bond St., Charlottesville, VA 22901
REGISTER ONLINE
or BY PHONE
Phone:
1-866-992-9940
Access Code:
CSLC-17-588-DM21
This program offers you and your family member/caregiver the opportunity to d
eepen your understanding of hemophilia, l
earn about the clinical profile of new medication, d
iscover valuable resources, tools, and support, and s
hare experiences, ask questions, and gain valuable information and support from others in the hemophilia community.
Anyone under 18 years of age must be accompanied by a parent or caregiver.
Please see Important Safety Information and full prescribing information available at this presentation.
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