I hope everyone has had a wonderful spring. Hard to believe that we are moving into summer and it is almost time for our annual meeting. Did you know that in June 2006 I attended my first annual meeting as Executive Director of VHF? And that my first annual meeting was in the same hotel that we are meeting in this year - Wyndham Virginia Crossings Hotel and Conference Center? Although VHF looks a bit different than it did 11 years ago the focus on education, advocacy, and community is still paramount. And the individuals who are connected to the Virginia bleeding disorder community remain simply amazing.

VHF continues to hold onto traditions, such as the annual meeting and summer camp, but also has some exciting new things that have been completed and/or are in the works. We have designed and printed a new brochure ( click here to see a copy), we anticipate unveiling our newly designed website at the end of the month, and we have posted a new development manager position ( click here to learn more) that we hope to hire by the end of summer. You might also notice the new look of this e-newsletter, which is updated to match the look of our soon to be unveiled website. So, be sure to click the links to read the articles that will be stored on our website's blog page.

And as always, I am here to serve you. Partnering with folks who are interested in VHF is one of my favorite parts of the job! Please do not hesitate to reach out if you have any questions, comments and/or suggestions on how we can continue strengthening VHF and serving the VA bleeding disorder community. I look forward to seeing you at an event soon!

Kelly

Kelly Waters, LCSW, MSW
Executive Director
Virginia Hemophilia Foundation

Save the date! Join the Virginia Hemophilia Foundation (VHF) for a race the entire family can enjoy. The VHF Trick or Trot is a fun and healthy way to show your support for all those whose lives are impacted by bleeding disorders. Registration will open soon!

Saturday, October 28, 2017 | 9:00 am

Robious Landing Park | Midlothian, VA

23rd - 24th - Annual Education Meeting at the Wyndham Virginia Crossings Hotel in Glen Allen.  REGISTRATION IS CLOSED. Contact [email protected] if you would like to be placed on the waiting list.

6th - Celebrate Summer Community Event at Ocean Breeze Waterpark in Virginia Beach. GO HERE TO RSVP.

10th - Educational Dinner in Roanoke (REGISTRATION COMING SOON)

19th - Back to School Community Event at Go Ape! in Williamsburg. GO HERE TO RSVP.

24th - 26th - NHF Annual Meeting in Chicago, IL. 

GO HERE FOR MORE INFORMATION.

On the evening of Thursday, May 4th, we had an educational dinner titled "No Sweat: Staying Active and Healthy with a Bleeding Disorder". The presentation was given by Marc Gilgannon, PT. Our families learned that everyone can benefit from an active lifestyle, not just those with a bleeding disorder. Being active can reduce feelings of depression and anxiety, increase self-esteem and self-confidence all while building healthy bones, muscles and joints. Everyone should try to maintain a healthy weight which will improve overall health and quality of life. Parents are encouraged to 'lead by example' and promote healthy lifestyles for our children and other family members. It was suggested that families should try an activity everyone can participate in such as biking, hiking and swimming. It is very important to warm up before and cool down after activities which will help prevent injuries. Always consult with your healthcare providers when starting a new activity and make a plan of treatment in relation to the physical activity. Thank you to Shire for sponsoring this informative dinner meeting.

The Virginia Beach Topgolf location continues to be a proven winner for community events. We had just over 60 people of all ages show up on Sunday, May 7th for an educational and lively game of "Factor Feud", a tasty lunch and time with a golf pro to practice the fundamentals of the golf swing.

We are pleased to be able to offer this opportunity to our community members. According to the National Hemophilia Foundation's booklet "Playing It Safe: Bleeding Disorders, Sports and Exercise," golf is among the sports considered safe for people with bleeding disorders. And, as players and physical therapists point out, golf is a rewarding sport on many levels and can be played for the rest of your life.

Thank you to our sponsors HPC Specialty Pharmacy and Octapharma.

Shawna Gray | HACA Member

Like many others, life for the Gray family is so busy that we barely get a moment to breathe. This year has been particularly challenging as our oldest daughter entered kindergarten, I started a new job, and we moved into a new home. I did not think we would make it through the winter season, as most of it was filled with severe nosebleeds, a lot of missed days at school and work, and several visits to the hospital. Our youngest daughter Lauryn was diagnosed with Von Williebrand's disease a little over a year ago.

We learned about family weekend at Camp Holiday Trails at one of the HACA events in Washington, DC. I was not sure whether my four and five-year old girls would fare well with the new experience, but I knew were all exhausted from the busyness of life, so I completed an application and prayed that we would have an opportunity to experience this first together.

From the moment we arrived at Camp Holiday Trails, we knew that we had found a jewel, not only in the camp and its staff, but also in the families that make up the bleeding disorder community. The camp's staff went above and beyond to cater to every member of our family. They even made sure Lauryn had her ice to chew on each night before she went to sleep. The activities were fun and challenging and brought out the kid in all of us. I enjoyed watching Layla come out of her shell. She led camp songs at circle time and easily connected with children she never met. My favorite parts of the weekend were the Amazing Race family game (I used muscles I never knew I had) and our camp "fireside" chats. During these moments, I had an opportunity to hear stories, ask questions, and let go of it all. It suddenly became apparent to me that this was the help that I had been asking for - a community of people from all walks of life, who are open, inclusive and willing to help others who share similar experiences with bleeding disorders. This was the missing piece that would help sustain us during the tough times, but also equip us with the knowledge and information we need to deal with Lauryn's disorder head on.

We have settled back into our normal routine, but our minds, bodies and spirits have been rejuvenated. We have been inspired by the great families that make up the bleeding disorder community and we will do our part to pass it on. The Gray family is forever grateful for the opportunity to unplug from it all, and for all of the love and support we received during the weekend.

Thank you to our sponsors Aptevo Therapeutics, Bioverativ, DrugCo Health, Hemophilia Federation of America, Novo Nordisk and Shire.

On Thursday, June 1st, a perfect late spring evening on the water, 30 members gathered for an educational dinner titled "Exploring emotional Well-Being in the Hemophilia Community". The presentation was facilitated by Nurse Educator, Linda Pollhammer. Our families were presented with an overview of mental health needs for people living with a bleeding disorder. Being diagnosed with a chronic condition or learning that your child has a chronic condition may make a person feel stressed, sad, and sometimes depressed. It is important to know that these feelings are normal, and it is also critical to know when to seek help if you feel overwhelmed with emotions. It was suggested that all family members should try practicing self-care such as eating well, getting good sleep, meditation/mindfulness, exercise and connecting with community. Thank you to Pfizer for sponsoring this dinner.

We had a great time at the Terry Lamb Batter Up event with the Norfolk Tides at Harbor Park on Saturday, June 3rd! The event was exciting from start to finish. We loved seeing old friends and meeting new community members at the educational dinner to start the event.  My husband Aaron was happy to share how Terry Lamb inspired him as someone who was determined to live life to the fullest no matter what challenges hemophilia brought him. My favorite part of the event was watching a couple get married in a Stars Wars themed ceremony on the field before the game. Aaron, Francis, and Penelope loved meeting Rip Tide and the Star Wars storm troopers. We all enjoyed seeing the Tides win the game and the fireworks to end the night. Thanks so much for this great event to bring families and friends together in the hemophilia community!

Thank you to our sponsor CSL Behring and Diplomat Specialty Infusion Group.

Summer is a great time for kids to enjoy different indoor and outdoor activities. Whether they are young children or teens, learn ways to keep your kids safe and healthy while they enjoy the summer fun.

Click on the link below to read about these summer tips:

Master water safety

Beat the heat and sun

Keep mosquitoes and ticks from bugging you this summer

Prevent injuries

Stop the violence

If you and your child are new to the camp experience, it's important that you discuss and understand what will happen during your child's time at camp. Both you and your child need to know how long you'll be separated from each other, that your child will be the responsibility of another person, and that your child will have to follow the rules of the camp and the directions of the counselors.

The road to independence and adulthood often travels through a college town. On the HFA toolkit page, you'll find resources about preparing and making the transition from high school to campus life. The toolkit has resources that are specific to living with a bleeding disorder and others that are more general, but are applicable if you or your child will need accommodations to be a successful student.