VIRGINIA HEMOPHILIA FOUNDATION
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VHF
MONTHLY NEWS & UPDATES
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WELCOME TO OUR NEW BOARD MEMBER!
Sarahbeth Spasojevich, Board President | Virginia Hemophilia Foundation
VHF would like to welcome Tory Gilliam to the Board of Directors, whom we’re delighted to have with us. He spent two years working with the Florida Hemophilia Association, and currently works in event planning in the Richmond area. He brings wide expertise to the Board, and a valued perspective to help our organization grow and sustain. We also want to thank Mike Silva and Megan Arrington for their service to the Board, as they rotate off this year. We appreciate their service and ideas over the years and look forward to having Mike Silva continue with VHF as a member of the Finance Committee. The current Executive Board includes myself, Sarahbeth Spasojevich as President, Kathy Mortimer as Vice President, Jean Parnell as Treasurer and Daniel Warren as Secretary. Board Members are Kate Breitbeil, Monika Eiden and Murai Johnson.
Volunteers are the “lifeblood” of any non-profit organization – ours included. They are the people who step forward to work at events, sit on committees, and volunteer to serve on our
board of directors. If you are interested in learning more Megan Schowengerdt at megan@vahemophilia.org or 804-740-8643.
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WHY I WALK: UNITE WALK TEAM CAPTAIN SPOTLIGHT
Crystal Morris | Team Captain - One of 20,000
I'm Crystal and my husband Gary and I are always on the go keeping up with our kiddos: Allison (7) and her older brother Ethan (13). Ethan was diagnosed with hemophilia as a baby.
Finding the Virginia Hemophilia Foundation has been such a help for our family. I'm so glad we attended the First Steps in Williamsburg when Ethan was first diagnosed! The information and support that began there has continued. We have particularly enjoyed the “Sleeping with the Fish” event and the Annual Meetings in Natural Bridge.
To support the
Unite for Bleeding Disorders Walk-Richmond Ethan's team is planning a fishing tournament to raise funds and awareness! Ethan loves fishing and it's a safe activity for those affected by bleeding disorders. Hopefully we'll “reel” in enough to help with Camp Youngblood at Camp Holiday Trails for a few campers next year!
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UNITE FOR BLEEDING DISORDERS WALK - FUNDRAISING INCENTIVES
2019 Unite Walk
When: Sunday, October 20th, 11:00 am
Where: Robious Landing Park, Midlothian
It’s hard to believe it’s August and despite the summer heat our
Unite for Bleeding Disorders Walk is less than three months away on October 20th! Join us and invite as many as you can to be a part of your team and fundraising efforts!
We need your help to meet our participant fundraising goal of $16,000!
SHOUT OUT to Temesha Pollock, the current top team captain. Her team, The Pollock Boys, have already raised $1,168! Awesome job Temesha, it’s so exciting that you have embraced the Unite Walk and we are impressed with your initiative in giving back to VHF!
One thing that has helped Temesha’s success is simply updating her photo on her personal website and sharing her story with family and friends on her personal page using social media!
Unite Walk Fundraising Incentives
August Incentive:
Register and make a donation to yourself in the month of August for at least $25 and get entered to win an Outback Steakhouse gift card!
Individual Fundraising Incentives (yes, a donation to yourself on your page counts!):
- $50 raised: Unite Walk PopSocket
- $100 raised: Unite Walk insulated tumbler
- $250 raised: Choice of Unite Walk insulated tumbler or phone charging power bank with the VHF logo!
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VOLUNTEER OF THE MONTH: DEBBIE BAUGHER
Debbie Baugher is mother to 3 sons and proud grandmother to 3 grandsons and 1 granddaughter. The youngest grandchild Ray is how she became involved with the Virginia Hemophilia Foundation. “Before his birth in 2014, I had a limited knowledge of bleeding disorders. When he was born and diagnosed with a severe Factor VIII deficiency, the learning began. I read every article I could find about treatments and quality of life. As a family we all agreed we didn’t want Ray to let this become a hurdle for him, but rather something that was just part of what makes him who he is: a VERY active little guy who loves digging in the dirt, riding his bike and learning everything he can about this big world.”
Debbie currently serves as an event-day volunteer at several large VHF events throughout the year, and as an active committee member with the Scholarship Committee.
“I’m so grateful to the VA chapter for the support they have provided to our family. From soft sided helmets for an active little guy learning to crawl and walk to all of the educational dinners and meetings for families living with bleeding disorders here in Virginia. I feel it’s my privilege to give back to the community that gives so much to us.”
Debbie lives in Stanardsville, VA with her husband Wesley, and has been employed with CVS for 17 years in the Long-Term Care division.
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ADVOCACY AND STORYTELLING: PRACTICAL STEPS FOR BEING AN EFFECTIVE ADVOCATE
Krista Davidson | HACA/VHF Advocacy Committee Co-chair
It’s hard to believe that the VHF annual education meeting has come and gone (
go here to see photos from the meeting)! We had an excellent time this year in Natural Bridge and heard from fantastic guest speakers throughout the weekend all with the theme of storytelling. During our Advocacy and Storytelling session on Saturday, we heard from Delegate Sam Rasoul of the 11th House District, Micheal DeGrandpre, HFA Creative Director and Becky Bowers-Lanier, HACA/VHF Advocacy Consultant. Delegate Rasoul shared several advocacy tips to help our stories have a more significant impact.
First, humans are emotional. When sharing your story with your legislator, try to find that emotional connection. Finding the feeling is usually the conveyance of your values. Delegate Rasoul listed these values as necessary to convey as advocates: connection, cooperation, respect, forgiveness and disagreeing without being disagreeable.
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*Sponsorship of 2019 events is still available, for more information contact Kelly Waters at
kelly@vahemophilia.org
or 804-740-8643*
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EDUCATIONAL DINNER - RICHMOND
Join us for an educational program for individuals with an inherited bleeding disorder. Dinner will be provided and there is no fee to attend.
Topic:
Resilience: Growing through Life’s Changes
Managing stress is an important aspect of our everyday lives. This presentation will discuss some of the common causes of stress and provide some examples of how to better adapt and manage adversity. Through some interactive and fun activities, you will explore what it means to be resilient and learn some associated skills as well as tips and tools for living a healthy lifestyle.
Speaker:
Betsy Koval, Senior Clinical Specialist, Takeda
When:
Thursday, August 15th, 6:00 pm
Where:
Maggiano’s Short Pump Town Center, Richmond
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INDUSTRY SYMPOSIUM AND BOMBARDIER BLOOD FILM SCREENING
When: Saturday, September 14th, 12:30 pm
Where: Norfolk,VA
Come join VHF to learn more about the products and services available to you in treating and managing your bleeding disorder AND celebrate with VHF as we highlight our Unite Walk and become one of the limited few to screen the amazing film Bombardier Blood at a chapter event in 2019!
Highlights Include: Meeting with leading drug manufacturers and specialty pharmacies to learn about what’s new in the treatment and management of bleeding disorders and the range of services available to you, a pep rally to celebrate our upcoming Unite for Bleeding Disorders Walk and an exclusive film screening of Bombardier Blood in the Living Sea theater at Nauticus Museum (tickets to the museum and a pre screening reception are included) and
we are thrilled that Chris Bombardier and Rob Bradford (Producer; Mountain Director/Cinematographer) will be joining us to discuss the film.
Go here to learn more about the film.
Hotel accommodations at Hilton Norfolk on Saturday, September 14th are available. Please note that rooms are limited and we will only be able to provide one-hotel room per family for those constituents who live more than 30 miles away from the program meeting site. Educational program, scheduled meals, film screening and overnight accommodations are provided at no cost for constituents that live in the VHF coverage area. Space is limited and we encourage you to register early!
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SAVE THE DATE - STATEWIDE ADVOCACY EDUCATIONAL DINNERS
Join VHF at one of 3 advocacy focused educational dinners statewide on Thursday, September 26th! These dinners will enable those affected by bleeding disorders to connect with people from their local community, as well as learn about tools for advocacy in the larger community.
When: Thursday, September 26th, 6:00 pm
Where: Three locations across the state - Richmond, Roanoke and Virginia Beach.
RSVP coming soon!
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Check out our photos on
Flickr
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