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FACTS N' FACTORS
MAY 2017
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Annual Education Meeting
Saturday, June 24th
Registration and breakfast begin at 7:30 am and the meeting will conclude by 4:30 pm. Overnight accommodations provided on Friday, June 23rd.
1000 Virginia Center Pkwy., Glen Allen, VA 23059
Join us for a day of educational programs, networking, and support for individuals and
families affected by inherited bleeding disorders!
Highlights Include:
- Talks on Advocacy, Disclosure, and Diversity in the Bleeding Disorders Community
- Break-out Sessions
- Exhibits by our Generous Sponsors
- Lyman Fisher Scholarship Recognition
- VHF Updates
- On-site Children and Teen Programming
- On-site Childcare for Those 5 and Under
Be Sure Not to Miss:
Dinner, education, and fun just for VHF members and their families on Friday, June 23rd at 6:00 pm at the Wyndham. Hotel accommodations provided Friday, June 23rd.
There is no cost to attend.
RSVP by Friday, May 19th
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Camp Youngblood
Sunday, July 23rd - Friday, 28th
Every summer kids and teens from around Virginia, whose lives are impacted by a bleeding disorder, enjoy a week of fun and learning with other kids that are faced with similar challenges and life experiences. Camp Youngblood is for children ages 7 - 17 with inherited bleeding disorders, their siblings, and children of members of the bleeding disorder community that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area. Camp is held at
Camp Holiday Trails which is a caring community committed to empowering, encouraging and educating Campers with chronic illnesses, their families and healthcare professionals.
APPLICATION DEADLINE HAS BEEN EXTENDED TO MAY 15TH!
There is a $25 registration fee.
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June
- 8th - Educational Dinner (Winchester) - RSVP Coming Soon
- 10th - Educational Lunch and Community Event. Come enjoy a guided Safari Wagon Tour at Virginia Safari Park, entrance to the Safari Village petting area and animal exhibits, followed by an educational lunch at the Natural Bridge Hotel. The topic will be "Understanding the Value of Genotyping". Go here to RSVP. (Natural Bridge)
July
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First Step Program
Murai Johnson | VHF Member and Board President
On April 1st, a beautiful Saturday morning, a quaint group met at the Richmond Metro Zoo for good food, fellowship and education at our First Step Program. A
National Hemophilia Foundation (NHF) NYLI member provided the educational presentation "Playing It Safe" for our newly diagnosed children while the parents had an intimate session with Jan Kuhn, RN, MPH, Program Manager for VA Bleeding Disorders Program and Lauren Dunn, MSW, Hemophilia Social Worker, VCU Medical Center. We discussed the ins and outs of nosebleeds, appropriate therapies; and when to call the HTC. We also discussed resources and links available on our
Virginia Hemophilia Foundation (VHF) website under the "Resource" tab that include basic information on hemophilia and VWD specific to school settings; customizable tool kits to prepare for school, educational videos, examples and how to implement IHP/IEP/504 Plans; dental guidance for professionals, a teacher's guide to a bleeding disorders, training for school healthcare professionals, and emergency guidance. There are also links from NHF Steps for Living, HFA, and Region III. What's really convenient is that on our website, you can click a link that brings up a one pager listing all those resources to print out.
Go HERE to see the one page listing.
To end our event, we received a special visit from our new friend, Agnes the penguin. Then enjoyed meeting the rest of the the animals as we continued our afternoon touring the zoo. Thank you to our sponsors National Hemophilia Foundation, Novo Nordisk, and Shire.
Hear what participants had to say:
"I enjoyed learning about how safe, moderate or dangerous different sports can be. We got to meet Agnes, a lovely penguin. Lastly, I was so excited about the lovely bird cage even though they were pecking me. I had so much fun!"
- Angelique Farina
"We played a game of Dinosaur tag which I enjoyed, no one could get my straws. Meeting Agnes was fun and we learned about the penguin species. I was excited to see the lions. Thanks for the trip VHF!!!!"
- Fiore Farina Jr.
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Hemophilia Federation of America 2017 Symposium
Daniel Warren | VHF Member, Board Member, and HFA Board Rep
April 6th - 9th
, the Hemophilia Federation of America (HFA) held its annual meeting in Providence, RI. Members and families from around the country met in Rhode Island for a weekend of education, fellowship, and opportunities to explore the beautiful New England city. Children participated in seminars about the importance of staying fit as a hemophiliac; the martial arts demonstration was an absolute blast for them! Parents and family members were offered different seminars on living with bleeding disorders and raising healthy children, with tracks on pain management and even a session on cooking the right foods for the hemophiliac body. So much of the weekend focused on hemophilia as a speed-bump in life's road rather than a mountain to be climbed every day. It was incredible to see how families met, shared stories, and came together to support one another in their efforts.
I had the honor of serving as the VHF representative at the HFA board of directors annual meeting. We met Thursday morning to continue talks of insurance management for families, research in therapies, and to discuss ways to improve our reach to all families affected by bleeding disorders. We are also looking to the future for opportunities to pay homage to the 10,000 lives affected by the Bad Blood scare many years ago, an inciting reason for HFA's inception. Great things are on the horizon for all people involved, and I encourage all who are available to meet us in Cleveland, OH for HFA 2018!
To learn more about HFA visit their website at www.hemophiliafed.org.
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World Hemophilia Day April 17, 2017
Light it Up Red! For World Hemophilia Day
For the past the past three years bleeding disorder community members and partners have worked to get more than 40 landmarks all over the world lit up red in honor of
World Hemophilia Day. This Light it Up Red! initiative is a great way to raise awareness and we are proud to announce that the Science Museum of Virginia in Richmond lit up red in awareness
on
April 17th
.Thank you to Bioverativ for planning this special tribute.
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World Hemophilia Day Science Lab Event
On Thursday, April 20th close to 40 members of the VHF community came together to honor the bleeding disorders community in recognition of
World Hemophilia Day. Sue Cowell of Bioverativ gave an inspiring presentation on all the ways that World Hemophilia Day was being recognized throughout the world as well as in Virginia. The Virginia Aquarium in Virginia Beach provided the perfect backdrop for the family friendly, hands-on science activities that took place. It was a night of learning and imagination and we look forward to gathering and celebrating this special day again in 2018. Thank you to our event sponsor Bioverativ.
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Spring Fundraiser and Silent Auction
Sarahbeth Spasojevich | VHF Member, Board Member, and Committee Co-Chair
On
April 23rd
, the Virginia Hemophilia foundation (VHF) held our Spring Fundraiser and Silent Auction "Spring on the Avenue," at The Branch Museum of Architecture and Design. Around 100 people gathered for live string music, heavy hors d'oeuvres catered by Mosaic, and socializing with friends and community members. There was also a a silent auction and raffle baskets, that included items like JetBlue and Southwest airfare, Stephen Colbert VIP tickets, SeaWorld and Aquatica in Orlando, and numerous restaurants and activities around Virginia. Through generous sponsorship, the silent auction, raffle baskets, a wine pull, and donations VHF raised over $40,000. Thank you to all of our incredible committee members, volunteers, donors, and sponsors, who helped make this event and others possible! We hope to see you there next April.
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Educational Lunch and Community Fishing Event
Heather Conner| VHF Program and Communication Director
On Saturday,
April 29th
, the hottest day of the year so far, 40 adventurous members gathered in Rockville, VA - just a short 30 minute drive west of Richmond (but felt light years away!).This serene and secluded location provided the perfect backdrop for a day of education, bonding, and fishing. We started off the event with a timely and informative presentation by Marc Gilgannon, PT, UVA Children's Hospital, the topic was "Health and Safety" and Marc guided the group through a discussion on how to stay active and healthy during the heat of the summer months as well as tips on being prepared for travel during vacation season. Then the group received private fishing instruction by
Virginia Outside, a group that specializes in getting kids and families outdoors. Throughout the day you could hear the squeals of delight as fish were caught (and released) and despite the heat everyone enjoyed the chance to slow down, take in the beautiful waterfront, and create lasting memories. Thank you to our sponsor Hemophilia Federation of America.
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Welcome Lane Bains - Program Specialist for the VBDP
Jan Kuhn, RN, MPH | Program Manager for VA Bleeding Disorders Program
It is with great pleasure (and relief!) that I'd like to introduce Katherine ("Lane") Bains to you.Lane started with our program last month as the program specialist for the Virginia Bleeding Disorders Program (VBDP). The program specialist for VBDP helps in the planning and implementation of the VBDP in working with multidisciplinary team members in each of the HTCs statewide to serve patients and families with inherited bleeding disorders. The position updates program eligibility, maintains the statewide statistics to show trends in care and manages expenditure reporting for the program.
I've asked her to share a little about herself:
My name is Katherine Lane Bains, but I prefer to go by Lane. I am 29 and a former VCU Ram, graduating in 2010 with a BS in psychology and a concentration in adolescent development. I have spent the past 7 years working at the Faison Center, first as a direct support staff providing ABA therapy to children with autism and then moving over to a more administrative role as a quality assurance specialist for the Adult Services program. I married my husband Andrew in June of last year and we are in the process of purchasing our first home in the Fulton Hill area of Richmond (we close on May 5th!). I have 3 cats and 1 very small miniature dachshund named Jack. I enjoy brunch, long walks through the city, coffee, reading (any suggestions?), and driving my husband insane by antiquing!
I am excited to be here and I can't wait to meet all of you soon!
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COMMUNITY NEWS AND RESOURCES
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Member Spotlight
Heather Bunn | VHF Member
I wanted to share this quilt that I made for my husband out of his collection of hemophilia camp t-shirts. Hemophilia camp at
Camp Holiday Trails has been a big part of my husbands life. This quilt shows his journey through life with hemophilia and camp. Both have made him a wonderful husband and father!
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Board President Spotlight - HFA Dateline Federation
The Spring 2017 issue of Hemophilia Federation of America's (HFA's) Dateline Federation includes an article highlighting our own VHF member and board president Murai Johnson.
Congratulations Murai - we are all so grateful to have you in our community and you continue to inspire us all!
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Staff Spotlight - Connect VA April 2017
Staff member Heather Conner was interviewed by Connect VA in early April.
Go HERE to read the interview to learn more about the work of VHF and how it is supported by the wonderful non-profit resources under the umbrella of The Community Foundation.
Connect VA is a one-stop communication network linking individuals with the ideas, information and resources that help the nonprofit community stay informed and work together. Connect VA is more than a website, it's a system to help you access what you need, when you need it.
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3 Fun New Ways to Get Active and Healthy
Do you have a bleeding disorder?
Are you questioning whether you should be physically active?
The answer? A definite "Yes!"
Regular physical activity has many benefits, such as improved cardiovascular fitness and healthy weight. It also can lower the risk of spontaneous joint bleeds, reduce feelings of anxiety and depression, and help you sleep better.
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Beams and Bubbles Deliver Gene Therapy to Mice with Hemophilia B
Scientists from the Center for Cardiovascular Research at the University of Hawaii (UH) have developed a novel approach to hemophilia gene therapy that employs microbubbles and an ultrasonic beam to deliver the treatment.
The study was led by Dr. Cindy Anderson and Dr. Chad Walton, who were both studying at UH's John A. Burns School of Medicine (JABSOM) during the breakthrough phase of research. Anderson at that time was a graduate student in the Cell & Molecular Biology Department at JABSOM and is now an Assistant Professor at Georgetown University. Walton was an Assistant Professor of Medicine at JABSOM and is now an assistant to the Vice-Chancellor for Research at UH Mānoa. Their study was funded by the American Heart Association and the U.S. National Institutes of Health.
Go HERE to continue reading. |
BloodCenter of Wisconsin Announces New Test for VWD
The BloodCenter of Wisconsin (BCW) recently announced the launch of a new and more sensitive test for von Willebrand disease (VWD), a genetic disorder characterized by either a qualitative or quantitative flaw in von Willebrand factor (VWF). Milwaukee-based BCW is a not-for-profit organization that specializes in blood services, organ, tissue and marrow donation, diagnostic testing, medical services and research.
Go HERE to continue reading. |
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