Facts N' Factors Newsletter| May 2016

 
Get Involved
 
VHF Annual Educational Meeting 2016

 

Heather Conner | VHF Program and Communication Director

Each June the Virginia Hemophilia Foundation (VHF) offers the Virginia bleeding disorders community a chance to come together for education on a wide variety of topics. It is also a chance for members to network with others faced with similar challenges and to learn more about the support that is available for individuals and families affected by bleeding disorders.

This years event will be held at the Doubletree by Hilton Charlottesville 990 Hilton Heights Road Charlottesville, VA 22901. We will come together on Friday evening, June 17th at 6:00 pm for dinner, viewing of the HFA Hemophilia History Boards, and an educational game night just for VHF members and their families. After dinner there will be plenty of time to relax at the hotel and catch up with friends both new and old (over night accommodations are available and can be booked and paid for by VHF).

On Saturday, June 18th breakfast and registration will begin
at 7:00 am and the meeting will conclude by 4:30 pm. Lunch and snacks will be provided.

Meeting Highlights Include:
  • Talks on Advocacy, Bleeding Disorder Research, Pain Management, and Break-out Sessions
  • Exhibits by our Generous Sponsors
  • Annual Membership Meeting and Scholarship Recognition
  • Selection of VHF's Junior National Championship Representatives
  • Children and Teen Programming (ages 6 - 18) at Camp Holiday Trails
  • On-site Childcare for Those 5 and Under
The registration fee is $25 and you must RSVP by May 20th in order to secure your hotel reservation.
 
This event has something for everyone and should not be missed! If you have questions contact VHF at 804-740-8643 or email admin@vahemophilia.org.
 
 
 
 
  Upcoming Events May 2016

 
 
Event Wrap-up

 Educational Dinner in Virginia Beach

 
Sharon Moore | VHF Board Member

On April 7th at Burton's Grill in Virginia Beach over 30 VHF members gathered for an educational dinner titled "The Healing Power of Harmony: Factor Musical Minds". The topic was conceived by speaker Shelby Smoak and it gave a very interesting introduction to music therapy as it relates to beneficial effects on the body. For example music evokes memories of special times, places, and events that can help reduce stress and anxiety that may aid in recovery. We can't wait to hear additional
information on this topic in the future. It was enjoyed by all! Thank you to our sponosr BioRx.
 
 First Step at Virginia Living Museum



Sasha Jean - Noel | VHF Master of Social Work Intern
 
On Saturday, April 9th, VHF hosted its annual First Step event for families with children who have been diagnosed with a bleeding disorder in the last 7 years. The event took place at the Virginia Living Museum in Newport News. We began with lunch, then the parents went to a separate room while the children colored, watched movies, and had a special visit from an owl and bunny. The parents participated in a casual, round table discussion that centered around infusing and disclosing their child's bleeding disorders to others. After the discussion, everyone had the opportunity to explore the exhibits and experience what the museum had to offer. We would like to extend a gracious thank you to our sponsors Baxalta and Novo Nordisk. 
 
  Women's Night Out at Escape Room

 
Laura Diego | VHF Member

The Women's Night Out with VHF on April 14th at the Escape Room in Virginia Beach was a blast! We had three teams that had to work together to try to solve the mystery in each room - having only an hour to do it!!! Unfortunately, our team was the only team that didn't succeed, but we came really close! It was nice getting to know some of the women better, and meeting some for the first time. I look forward to the next Women's Night Out and seeing these wonderful ladies again. Thank you to our speaker Lori Kunkel, CSL Behring Hemophilia Mom Advocate and thank you to CSL Behring for sponsoring this wonderful event. 
 
Go here for more event photos.  
 

  2016 Wine Tasting and Silent Auction    

 Jean Parnell | Wine Tasting Committee Chair and VHF Board Member  
  
Our 12th annual Wine Tasting and Silent Auction on Sunday, April 24th, had no choice, but to be a great success. It was a beautiful 70 degree day, the fountain courtyard at the historical and picturesque Valentine Museum provided the perfect stage for friends, family and guests to hang out, sip wine, enjoy tasty food and hear the delightful sounds of the Church Hill Music Company. Meanwhile having fun bidding and outbidding each other for trips, excursions, restaurants and gifts in the silent auction, as well as taking a chance with the raffle. The whole atmosphere of the day was fun and energizing! I am happy to report that our own hard working Executive Director will be relaxing in the Outer Banks of North Carolina, I believe I did see Kelly's dad lingering by that silent auction item!

We added a little mystery this year with a wine pull. Folks bought a ticket not knowing what vintage they would go home with! The lucky winner of an $80.00 bottle was our advocacy champ Becky Bowers-Lanier - enjoy every sip Becky! The Valentine allowed guests to tour the museum and the Hemophilia Federation of America's (HFA) History Boards were displayed inside with Sonji Wilkes of HFA available to answer questions and share more about hemophilia's history. I'm embarrassed to admit I had not toured the exhibits in the Valentine before Sunday and now I am sure to return, it is a true Richmond treasure. 

This event did require quite a bit of time and planning, hundreds of emails, not to mention all that went into requesting and gathering all those wonderful auction items!  From the ordering of linens to the tasty take away boxes it was all done with so much care and love! I cannot say enough about the Wine Tasting committee (pictured in the photos above), the VHF staff and our corporate friends. Because of everyones hard work and generosity we brought in over $28,000 (almost $10,000 more than last year) and had almost 100 attendees - our best year yet! I would do it all over again with them....next year! AND I hope to see you there as well.
   
 
 

 
HTC News

Update from the Thrombosis and Hemostasis Society of North America (THSNA) Summit in Chicago

 
Jan Kuhn, RN, MPH | Program Manager, Central Virginia Center for Coagulation Disorder, Virginia Bleeding Disorders Program

The generous support of VHF helped me attend the THSNA meeting in April and participate in many excellent presentations. Two of these may be of specific interest to VHF members: 1) an update on platelet disorders; and 2) promising new treatments for hemophilia.
 
The first presentation was part of the nursing preconference session and included clinical and laboratory evaluation of inherited platelet disorders. Unlike hemophilia, diagnosing inherited platelet disorders can be a complex process, including careful review of the patient and family's medical history, physical exam and laboratory testing. It is often frustrating for families as lab testing is very expensive and may require repeated lab draws, based on the results of previous tests. As medical science knowledge grows, the best strategies for diagnosing platelet disorders will likely change. Increasingly, we are understanding the platelet disorders are a very heterogeneous group, meaning that we are finding more and more types of platelet disorders. For example, platelet dense granuole deficiencies may be as common as von Willebrand Disease! We are also recognizing the need for newer tests that would automate and standardize testing for greater accessibility and reliability. For patients, the good news is that we are increasingly coming to understand the complexity of these "pesky platelets" with hope of better diagnosis and treatment.

 
 
Community News and Articles

Hemophilia Federation of America Symposium 2016 - Las Vegas
 

Z ack Bordone | VHF Board Member and VHF Representative for the HFA Board of Directors
 
Hemophilia Federation of America (HFA) Symposium 2016 was located in beautiful Las Vegas Nevada this year! This was my second year serving on the HFA board as the Virginia Hemophilia Foundation's representative. I had a fantastic time with truly down to earth people. Each of HFA's board members takes their role standing as a voice for their community very seriously, and we are gaining strength and more support every single year. For instance, in 2014, the HFA program committee produced 100 community programs. In 2016, there will be over 200 programs. HFA is starting to explore different educational programs that are groundbreaking. For example, a program is being designed for siblings without a bleeding disorder. Surely this will help brothers and sisters become more knowledgeable about bleeding disorders, transforming them into the best advocates possible.

 
VHF National Meeting Scholarship Winners

Kelsie Gail | VHF Member

 

"We had a great experience at the Hemophilia Federation of America symposium in Las Vegas. Being new to the hemophilia community, it was comforting to meet people of all ages with hemophilia B and to learn more about new products and other family experiences. We really enjoyed learning more about the history and how medical practice has changed. We feel extremely grateful for the changes and feel more positive about our sons future. Thanks again for everything VHF!! We had an awesome time."

Davida Wickline | VHF Member

 

"Our family would like to thank VHF for the scholarship to attend such an amazing Symposium! This meeting was in an beautiful location that our family had never been to, Las Vegas. The views from the airplane were jaw dropping and when you actually arrived, words can not explain the gorgeousness of the surrounding landscape.

We attended one particular breakfast that was very inspiring, Dr. Mae Jemison, the first African-American woman astronaut in space spoke about how we as parents should encourage our children to pursue Science & Technology. She also touched on the fact that most adults are intimidated by modern technology. Dr. Jemison recommended that as parents we should strive to understand and utilize the items our children so easily use every day. Who knows, one of our children could be the next Astronaut, Nuclear Physicist, or someone who discovers a cure for Hemophilia! Speaking of technology, Wade discovered a new gadget called a Vein Viewer. This machine can shine a light on your arm/hand and illuminate veins! It was amazing and I know as a parent of a child with a bleeding disorder, it sure would come in handy some mornings. I hope all families of the VHF will consider applying for the next scholarship to attend a national meeting, I know our family had the trip of a lifetime!"

Go here to see more photos of VHF members at the 2016 HFA Symposium.  
 
         

2015 VHF Needs Assessment Results
Sasha Jean - Noel | VHF Master of Social Work Intern

In the fall of 2015, VHF distributed a needs assessment survey at two events: The Family Overnight at Great Wolf Lodge and the Adult Retreat. Out of 60 possible respondents, we received 56 completed surveys. Click here to read about what a needs assessment is, what the questions were, and how individuals responded. We would like to thank all those who submitted a needs assessment survey. Assessing our programs and services is an ongoing process, so please do not hesitate to reach out to Kelly Waters at info@vahemophilia.org or 804-7 40-8643. We welcome your input!
 
In Case You Missed It... Bleeding Disorders in the National News

National Hemophilia Foundation's CEO Val Bias Interview Featured in JET Magazine

 
NHF CEO Val D. Bias was featured in Jet Magazine, where he shared his personal story about living with hemophilia, HIV and hep C. Go here to read the story.


 
This Woman's Period Lasted Nonstop for 5 Years - What We Can Learn From Her Story



An Australian woman named Chloe Christos, got her first period when she was 14 and didn't stop until she was 19. When she finally came forward with her experience, she was diagnosed with von Willebrand disease.Go here to read the article from Huffington Post.





 
Upcoming Events

  Summer 2016


June 4 -   Batter Up Community Event at Harbor Park  RSVP  (Norfolk)
June 17 - 18 - Annual Education Meeting (Charlottesville)
                       * INDUSTRY RSVP 
June 30 - Educational Dinner (Winchester) (RSVP COMING SOON)

July 21-23 - NHF Annual Meeting (Orlando)
July 24-28 - World Federation of Hemophilia - World Congress (Orlando)
July 24-29 - Camp Youngblood at Camp Holiday Trails (Charlottesville)

August 6 - Teen Weekend (Richmond)
August 7 - Celebrate Summer Community Event at Browns Island (Richmond)
August 11 - Educational Dinner (Chesapeake)
August 27 - Back To School Picnic at Ocean Breeze Waterpark (Virginia Beach)

September 14 - Educational Dinner (Richmond)
September 24-25 - Family Retreat at Great Wolf Lodge (Williamsburg)
September 29 - Educational Dinner (TBD)



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