VIRGINIA HEMOPHILIA FOUNDATION
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VHF
MONTHLY NEWS & UPDATES
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SEPTEMBER IS NATIONAL PREPAREDNESS MONTH
National Preparedness Month is observed each September and is sponsored by the Federal Emergency Management Agency (FEMA). National Preparedness Month promotes family and community disaster and emergency planning now and throughout the year. The 2019 theme is “Prepared, Not Scared.” Visit
https://www.ready.gov/september to find great information and resources to help you prepare for and respond to emergencies. As we all know, this preparation is especially important for persons with chronic health conditions, so be informed and make a plan.
The Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) have many tools and resources to help the bleeding disorders community be proactive:
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UNITE FOR BLEEDING DISORDERS WALK - ONLY SIX WEEKS AWAY!
When: Sunday, October 20th, 11:00 am
Where: Robious Landing Park, Midlothian
Our Unite for Bleeding Disorders Walk is kicking into high gear and coming up in about 6 weeks on October 20th! We hope you will join us and invite friends, family and co-workers to be a part of your team and fundraising efforts. We need your help to meet our participant fundraising goal of $16,000! So far our participants have raised $3,726!
Shout out to our current top teams: The Pollock Boys, Team Lukasz and Spazvengers!
This year’s walk program will feature:
- A walk for all fitness levels in a gorgeous park setting
- Unite Pinwheel ceremony
- FREE face painting and balloon artist, Star Wars characters and Buddy the Blood Drop!
- Crowd favorite Jonathan the Juggler
- Carytown Burgers and Fries food truck (food for purchase, see below to earn yours for FREE)
- Sweet treats by Krecek Kakes for all attendees
- Camp Youngblood reunion
Individual Fundraising Incentives:
- $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!
- $500- 4 free lunch vouchers to Carytown Burgers and Fries
- $1000- Team VIP Tent to gather at the walk, plus special goodies!
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FALL ADVOCACY: GET READY, BUSY FALL AHEAD
Ann Kendall | Co-Chair VHF/HACA Advocacy Committee
Fall 2019 will be a busy time in advocacy throughout Virginia from dinners to educational calls. This fall, we also launch our new Advocacy Ambassadors program – leading up to what we expect to be a busy legislative session beginning in January.
VHF Advocacy Dinners, September 26: Richmond, Roanoke, Virginia Beach. Dinners will focus on advocacy related issues, such as storytelling, self-advocacy, and tools for advocacy in the larger community. Local elected officials will also be joining us in Roanoke and Richmond.
To register for your local dinner, please go here:
Advocacy Committee: Monthly Educational Calls. Each month, our advocacy committee will host educational phone calls on topics of importance leading up to Richmond Days 2020. Topics set for inclusion this fall: pharmacy issues, Virginia’s rare disease caucus and “junk” insurance plans.
Advocacy Ambassadors: This fall, we will be developing a group of dedicated Advocacy Ambassadors to deepen our connections with local elected and appointed officials. Ambassadors will work to create relationships, provide introductions and establish local awareness of the bleeding disorders community. Activities for ambassadors may include:
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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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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. Dinner will be provided and there is no fee to attend.
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RICHMOND ADVOCACY DINNER
When: Thursday, September 26th | 6:00 pm
Where: Alliance Group, 2201 W Main St., Richmond, VA 23220
Topic: A panel discussion and Q&A session on the personal advocacy journey of seasoned Virginia legislators. The panel participants will discuss how they came to be an advocate, what they have learned and pointers for how to be a more effective advocate.
Speakers: Confirmed panelists are Del. Betsy Carr and Del. Delores McQuinn and invited/to be confirmed panelist is Senator Glen Sturtevant.
This event is open to all community members.
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ROANOKE ADVOCACY DINNER
We are excited to announce that special guest Delegate Joseph P. McNamara will be in attendance to greet constituents and share a few words to start the evening!
When: Thursday, September 26th | 6:00 pm
Where: Fortunato, 104 Kirk Ave SW, Roanoke, VA 24011
Topic: "Empowered Tools for Self-Advocacy" - Learn about the importance of knowing who you are and the communication skills needed to talk with legislators, health professionals, family and friends.
Speaker: Linda Pollhammer, Patient Affairs Liaison, Pfizer Inc.
This event is open to VHF constituents that live in the South Western Virginia Region.
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VIRGINIA BEACH ADVOCACY DINNER
When: Thursday, September 26th | 6:00 pm
Where: Steinhilber’s, 653 Thalia Rd., Virginia Beach, VA 23452
Topic: "Sharing Your Story: Advocacy In The Bleeding Disorders Community" - Everyone has a story to tell. It is important to be able to share a strong story beyond the bleeding disorder community to help self confidence and to increase awareness of bleeding disorders in general and the need for access to high-quality healthcare. This program discusses the critical elements of a compelling story and helps attendees develop their own story through effective communication skills.
Speaker: Jean Marandola, Senior Clinical Specialist, Takeda
This event is open to VHF constituents that live in the Tidewater Region.
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MEN'S RETREAT WEEKEND
New this year, in partnership with the Hemophilia Association of the Capital Area (HACA), we are offering a Men’s Retreat Weekend! Participants will enjoy education and time to gather and share with other people who encounter similar challenges.
When: Saturday, November 9th - Sunday November 10th
Where: Wintergreen Resort, 39 Mountain Inn Loop, Roseland, VA 22967
This retreat is open to men age 21 and up with inherited bleeding disorders and/or to men whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members).
This retreat is for constituents that live in the HACA/VHF coverage area. There is a $25 registration fee that covers all educational programs and activities, scheduled meals and overnight accommodations provided throughout the weekend.
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SAVE THE DATE - WINTER GATHERINGS
Come celebrate the winter season with your bleeding disorders community. There will be food, education and good times with your friends and family!
When: Saturday, December 7th
Where: Two locations - Dave & Busters Richmond and Dave & Busters Virginia Beach
RSVP coming soon!
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Check out our photos on
Flickr
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