The VHF Annual Meeting took us full circle to the beautiful Wyndham Virginia Crossings Hotel, a location where we first met Kelly Waters, 11 years ago! The quaint atmosphere gave us many opportunities to spend both days with new and old friends. On Friday night, we fellow-shipped by the pool and on the patio with many families! Saturday was packed with information on government relations and health care presented by Michelle Rice, NHF’s senior Vice President of Public Policy & Stakeholder Relations. For a change of pace, we transitioned into the progressive exhibits which are a ‘speed-dating’ style of learning about what each sponsor had to offer. It kept us on our toes (and filled with candy)!

Next, presented by Connie Montgomery from NHF’s Culture Diversity Working Group, was a discussion and interactive session entitled “Patchwork Quilt”. A unique perspective on understanding that although we are diverse in the bleeding disorders community, we also have many similarities that we share that make us family. We put that concept together when multiple groups were formed and each person selected from scattered pieces of fabric. Different patterns and shapes, representing our differences, were mended into our own little patchwork quilt. We then took those scattered pieces, turning and matching them together into a larger quilt. Demonstrating that although we are different, we are the same. Physically working together, laughing, learning, communicating toward the same purpose and goal. We all have a connection, we are family.

As I think about all of the families and individuals that I’ve encountered as first a daughter and then as a mom in the bleeding disorders community, I can say that it has taken family and a village to raise our warriors, support our loved ones, understand changes and innovations in the bleeding disorders community. I have learned from each and every one of you, have loved representing and presenting perspective from our diverse community as your President; could not be more proud of the leaders representing all of us to the greater community, Kelly & Heather, always our champions! We are family Virginia Hemophilia Foundation!

“We had fun with the Mad Scientist, making water erupt high into the air, melting cups and creating slime. We also learned that some foods are bad, some are a little bad, and some are good for getting nutrients from them. This is important for your joints to stay healthy. So that I can keep playing basketball and riding my bike.”  ~ Jacob Johnson

“In the teen session, we met leaders from NYLI, we played Jeporady that focused on hemophilia and vWd. During the game we learned that 1 out of 3 people have vWd. We also discussed how people see us and we see ourselves. This was demonstrated by painting a blank mask. The inside represented what we saw in ourselves and the outside portrayed how other people saw us. I learned that the way that we see ourselves is not always the same way that people see us. We are all unique and special in our own way. In identifying our uniqueness, we discussed opportunities to advocate for yourself in school, as situations arise. For example having a bleed in gym class and discussing with the teacher why you need to sit out is an opportunity to speak up about your own health. Which led perfectly into our meeting with Michele Morath with HFA’s Fit Factor Program. We learned about Stop Light Foods. If food is in the red category ( ice cream, cake, cookies) really limit intake, if it’s in the yellow category ( baked/grilled chicken, salad with lots of dressing) you can eat but not as healthy, if foods are in the green category ( lean meats, fresh fruits & vegetables, water) eat more often than the other categories and incorporate exercises.”Soren Johnson 

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Murai Johnson and Family | VHF Members