Facts N' Factors e-Newsletter | June 2015
Summer Fun!

It's warm, relaxing and the long days provide more time for swimming, bike riding, and the great outdoors. It also brings vacation and travel, but before you pack your bags, here are some important articles to keep you and your family safe so you don't miss out on any fun! Also speaking of summer fun don't miss out on our Celebrating Summer Event at The Adventure Park at the VA Aquarium on Sunday, August 23rd.

Be Brave! Bravelets Update 

Last month we shared that VHF has teamed up with Bravelets to create an opportunity for all of us to wear reminders of our bravery - Bravelets are beautiful bracelets inscribed with the words "be brave". $10 from the purchase of each Bravelet goes directly to VHF. So far because of your generosity we have raised $160 - thank you for your support and keep buying and sharing! 



Get Involved

Upcoming VHF Events











June 13 - Family Fun Day at the Virginia Safari Park Natural Bridge RSVP  (only 4 spots left!) 

June 19 - 20 - Annual Educational Meeting Hilton Garden Inn - Suffolk RSVP 

July 26-31  - Camp Youngblood at Camp Holiday Trails  

August 6 - Educational Dinner Winchester RSVP   

August 13 - 15 - NHF Annual Meeting Dallas, TX 

August  22 - CEO Program for Teens  Virginia Beach  RSVP 

August 23 - Celebrating Summer Event  Virginia Beach  RSVP  


Event Wrap-up
"Savor the Flavor" Wine Tasting and Silent Auction

Dorothy O'Connor | Wine Tasting Committee Chairperson


Wine Tasting Collage  

On Sunday, May 3rd, that's exactly what over 70 participants did at C'est Le Vin Wine Bar and Art Gallery in Richmond. The weather was perfect; the food delicious, and the live music by the Church Hill Music Co. was wonderful. Of course we also enjoyed the opportunity to sample several flavorful wines and hopefully discovered a new favorite flavor! The Silent Auction and Raffle items were a huge hit with our wine sipping friends, and everyone was able to take home a VHF wine glass filled with yummy chocolate delights at the end of the afternoon.


Many thanks to the Wine Tasting Committee: Rhonda Heuple, Megan Lawson, Jean Parnell, Dorothy O'Connor and Marijane Valentino AND to our many generous sponsors: CSL Behring, Baxter, Novo Nordisk, Pfizer, Accredo, BioRx, DrugCo Health, and AHF. Please save the date and join us for next year's wine tasting on Sunday, April 24th.


Go HERE to see our event sponsors and go HERE to see our donors.


Terry Lamb Batter Up Event  

Sharon Moore | VHF Board Member 


Batter Up Event  

On Saturday, May 9th over 70 VHF members came out for education, networking with other families, and tickets to see the Norfolk Tides take on the Buffalo Bison. In addition, Jesse Schrader, CSL's Gettin in the Game athlete, shared his inspiring story of fulfilling his baseball dream. This was our family's third Batter Up Event, and we enjoyed meeting new attendees and catching up with familiar faces. Even though we had only met Terry Lamb a few times, it is very fitting that this fun event was dedicated to him. It was a loooong game but worth the wait to see the fireworks and have to kids run the bases! We look forward to attending again next year. Thank you to our sponsors CSL Behring and MedPro RX. 


Family Weekend at Camp Holiday Trails 

Ana Baggiano | CHT Program Director  


Family Weekend Group Photo  

It's a bird...it's a plane...no, it's Family Hemophilia Camp! Families came from far and wide to enjoy a weekend of fun, bonding, and "super" times at Camp Holiday Trails (CHT) in Charlottesville on Friday, May 15 through Sunday, May 17. The superhero-themed weekend kicked off Friday evening with a dinner and a campfire that sparked new friendships and encouraged catching up with old friends.

Thank you to our sponsors: Baxter,Bayer, Biogen, DrugCo Health, Grifols,
Hemophilia Federation of America, Novo Nordisk, and Pfizer.


Go HERE to read more.


Confessions of a Mom Headed to Family Camp

Amy Walker | VHF Member


I have to confess that I don't always look forward to certain aspects of family camp at Camp Holiday Trails. As a mom going to family camp, the packing and preparing are not my favorite tasks. Thinking about bugs, dirt, and the mountain of dirty laundry upon return can make my head spin. Figuring out how much factor and devices to take for multiple bleed scenarios for our two boys is something that is stressful and I have to mentally prepare.


However, each year when we make that long drive up the hill to CHT my perspective changes as we are greeted by enthusiastic counselors and staff. I begin to see the overwhelming blessings of Family Camp. Seeing the excitement in my kid's eyes as they look forward to attempting new things while hanging out with friends makes me look forward to chatting with other families who are dealing with the same bleeding disorder issues. The rock wall and boating continue to be activities that our family will talk about all year. Older fishermen and women giving up their Saturday to help kids learn to fish can't be replaced. Learning new and relearning old silly songs around the campfire with s'mores are memories we will continue to treasure. Our 10 year old attempting to infuse on the camp picnic tables was encouraging another camper to take steps toward self-infusion. We laughed and clapped our
hands off as our own kids and kids who have a special place in our hearts bravely take the stage and entertain us with their new -found skills.


Go HERE to read more.


Educational Dinner

Kelly Waters | VHF Executive Director   




On Thursday, May 21st, families from the western part of the state gathered in Harrisonburg for an Italian dinner, education, and networking. It was wonderful to meet so many new folks, as well as reconnect with old friends. Education focused on Dental Care, which highlighted prevention, regular visits to the dentist, and the importance of the HTC-dentist partnership. It was particularly interesting to hear personal stories and how they successfully managed the process. Everyone contributed to the conversation. In fact, one of our young dinner participants reminded us about the value of the MedicAlert bracelet and showed us his. Thank you Baxter for sponsoring this important educational dinner. 


Please join us again as we travel west to visit the Virginia Safari Park and have an educational lunch at the Natural Bridge Hotel. Go HERE to register and learn more. 


Biogen Banner

HTC News
World Federation of Hemophilia - Musculoskeletal Congress 2015
Marc Gilgannon, PT | UVA HTC

Marc Gilgannon  
Belfast, Northern Ireland was the site of this year's WFH Musculoskeletal Congress, a research based program that is held every two years focusing on a comprehensive approach to hemophilia care. The event had approximately 370 registrants from 60 different countries and featured 2 full days and 2 half days of educational presentations from healthcare providers from around the globe. The USA contingency of physical therapists attending the meeting consisted of 9 PT's from HTC's across the country.
Community News
VWD Summit Highights
Meeting helped identify challenges and opportunities

By Sarah M. Aldridge, MS | Originally Published in Hemaware April 2015

Although they outnumber people with hemophilia by a large margin, those with von Willebrand disease (VWD) feel practically invisible at times. Some feel stigmatized, others' symptoms are dismissed by untrained providers, and still others deal with untreated problems and pain.


To raise awareness of VWD and improve patients' access to care, the National Hemophilia Foundation (NHF) convened a summit in Washington, DC, on November 21, 2014. A background paper prepared by the Lewin Group, a national healthcare consulting firm, identified challenges and opportunities for addressing the needs of the people with VWD.


  Go HERE to read more.

Upcoming Events



  • October 3 - 4 - Adult Retreat (Virginia Beach)
  • October 15 - Educational Dinner (Tidewater Region)
  • October 24 - HACA National Hemophilia Walk (Washington, DC)
  • October 31 - Trick or Trot 5K Fundraiser (Midlothian)


  • November 14 - Educational Lunch and Family Fun Event (Hampton)
  • November 17 -Women's Night Out (Richmond)


  • December 8 - Educational Dinner and Garden Fest of Lights (Richmond)
  • December 12 - Holiday Parties (Charlottesville, Richmond, and Norfolk)


Thank you to our e-Newsletter supporter Baxter  www.baxter.com