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We are excited to offer our Winter Family Fun Day and first event of the 2020 Calendar. We will be hosting an educational dinner at the Holiday Inn located on 1188 Pineview Dr, Ste 200, Morgantown, WV 26505 followed by the West Virginia vs Texas Tech Basketball Game (6 PM tip-off). The game is labeled as family day by WVU meaning there will be concession stand vouchers given to families.
Dinner starts at 3PM and it is scheduled to end around 4:15PM. At that time families can start making their way to the Coliseum.
Due to limited budget and cost of tickets the chapter can only offer a restricted number of tickets, we highly encourage families to sign up as soon as possible.
There will be no transportation provided from the restaurant to the Coliseum, families should plan on parking on their own or taking an Uber or Lyft to the game. Event happens rain, shine.... or snow.
We are delighted to invite you to attend WV Hemophilia Foundation's Charleston Days to be held Wednesday, March 4th through Thursday, March 5th 2020, in Charleston, West Virginia.
Dinner on March 4th and Lodging will be held at the Four Points by Sheraton Charleston located on 600 Kanawha Boulevard East, Charleston, WV 25301.
The Public Policy Team is working diligently to finalize what issues will be prioritized in March. We are closely monitoring various legislative and policy opportunities as we prepare for our event in March.
On March 4th we will be hosting a preparation dinner that concentrates on improving skills surrounding advocacy such as self-empowerment, talking points to share with legislators, and more. The evening will also be a time to gather as a community and share how to improve the bleeding disorders community in West Virginia.
March 5th will start with a breakfast and final minute preparations for a big day in the Capitol Building. We will be driving to the Capitol Building and starting the day with 1-on-1 meetings with local legislators to provide awareness, education, and advocacy around bleeding disorders challenges that our community faces on a daily basis and shine the light on how to improve the current status. (If driving to the Capitol Building, and PARKING INSIDE you must provide the Foundation one week in advance with your car's license plate for access to the garage, otherwise you will not be able to park in the building and must find street parking). The day will conclude with a possible visit to the Governor's Mansion and participate on the signing of a proclamation declaring march as bleeding disorders awareness month in West Virginia. More details will be provided regarding the signing and other activities such as lunch and dinner.
The Foundation is pleased to announce we will be able to provide overnight lodging for those traveling from afar, we recommend signing up for those spots as early as possible due to funding restrictions for the event. The event is open to all members of the bleeding disorder community including children.
Wednesday, March 4th
6:00 PM Opening Remarks by West Virginia Hemophilia Foundation
6:15 PM Dinner
6:30 PM 2020 Update on State and Federal Legislation
6:45 PM Training Session facilitated by Dillon Harp (NHF)
7:15 PM Power of Sharing Your Story by Paul Brayshaw
Thursday, March 5th
9:00 AM Meet at Capitol Building (House Rotunda)
9:15 AM Start of meetings with legislators (House & Senate)
12:30 PM Luncheon meet and greet with legislators
TBD Photo on House Chamber
TBD Photo and signage of Proclamation March as Bleeding Disorders Awareness Month at Governor’s Mansion
Dress Code: Please dress appropriately to meet with legislators. Dress and suit or formal ware is best recommended. We will have Red Ties to distribute for all going.
For more information please contact Fernando Andrzejevski, Executive Director via email or phone listed below.
World Hemophilia Day
April 17, 2020 is the 30th anniversary of World Hemophilia Day! The longevity of this celebration is proof of the dedication and tight-knit nature of our community.
The theme of World Hemophilia Day in 2020 is “Get+involved”. It’s a call to action for everyone to help drive the WFH vision of “Treatment for all” at the community and global level. Whether you are a patient, a family member or caregiver, a corporate partner, a volunteer, or a healthcare provider, we want to encourage you to help increase the awareness of inherited bleeding disorders and the need to make access to adequate care possible everywhere in the world.
The West Virginia Chapter of NHF is excited to announce our 2020 Industry Symposium, where leading drug manufacturers are able to inform you about new products, programs, and answer questions patients, caregivers, and providers may have.
WV NHF is providing industry partners the opportunity to speak directly to patients, caregivers, and providers about their current treatments related to bleeding disorders as well as provide information about new treatments under development, services, and support available to those affected.
Following the conclusion of the event, patients and caregivers will have to opportunity to watch the WVU vs Kansas State Baseball Game. First pitch scheduled for 6PM.
More information about the event will be posted at a later time.
Camp Winica HemoVon
Camp Winaca HemoVon is a 5 day residential camp for children ages 7-17 who have either a bleeding disorder or a childhood cancer diagnosis. Mission: To positively impact and enrich the lives of children diagnosed with cancer or bleeding disorders by offering a camp experience, independent from their family, in a medically safe and educationally supportive environment while promoting personal growth, self worth, self-reliance and creativity through activities and the development of personal relationships that will carry over to their daily lives and throughout their lifetime.
What We Do
We provide a one week residential summer camp program held at Camp Twin Creeks in Marlinton, WV. Camp Twin Creeks provides the camp counseling staff, programming staff and all the activities. WVU Medicine provides all the medical staff and staffs a 24 hour medical infirmary throughout the week of camp. We encourage students from the School of Medicine, Nursing, Exercise Physiology, Pharmacy, Physical Therapy, Psychology or other health care related disciplines to consider volunteering.
All volunteers must complete the Children on Campus training through WVU Human Resources as well as complete a criminal background check and a national sex offenders check.
Volunteer opportunities include: Bus chaperone, medical infirmary under supervision of the Camp Medical Director or other licensed medical staff, camp counselor, photographer.
This camp is setup and operated by WVU Medicine.
Join us at Snowshoe Resort for a weekend filled with fun, education, and bonding between families affected by bleeding disorders.
More information to follow.
National Bleeding Disorders Conference
WV NHF is proud to offer scholarships for families affected by bleeding disorders to attend the National Hemophilia Foundation's Bleeding Disorders Conference. Dates for the event are August 6th to August 8th in Atlanta, Georgia.
More information to follow.
Unite for Bleeding Disorders Walk
Join us for the 2020 West Virginia Unite for Bleeding Disorders Walk.