|
HAPPY 2018!
VHF has had a great start to the year with a successful advocacy day in Richmond and a well attended educational dinner in Chesapeake. W
e are currently hard at work planning exciting educational programs and fundraisers so make sure to visit our website to see our full 2018 calendar.
|
|
F
EBRUARY
- 3rd - Bowling for Bleeding Disorders Fundraiser (Richmond and Chesapeake) GO HERE TO RSVP
- 10th - Educational Lunch and Community Event - Marvel Universe Live (Richmond) GO HERE TO RSVP
|
This annual fundraiser is scheduled during the month of March in honor of Bleeding Disorders Awareness Month and proceeds from this event go to support Camp Youngblood at Camp Holiday Trails. It costs VHF $600 to send a kid to camp for one week and you can help us reach our peer-to-peer fundraising goal of $8,000 by registering as an individual, making a personal donation and fundraising.
FUNDRAISING CHALLENGE:
Raise $100: You will receive a branded VHF insulated tumbler!
Raise $250: You will receive the tumbler OR a VHF power bank!
Registration Fee for both Chesapeake and Richmond Location:
Early bird pricing extended to February 7th
$25 for adults, $15 for kids (price for both adults and kids will increase to $30 after this date).
Fee Includes: 2 hours of bowling, shoe rental, food, treats, and more! Event t-shirts will be available for those who are registered by 2/7/2018, after that they are first come first served.
|
REGISTRATION FOR FAMILY WEEKEND AND CAMP YOUNGBLOOD AT CAMP HOLIDAY TRAILS IS NOW OPEN!
Family Weekend at Camp Holiday Trails | Friday, April 27 - Sunday, April 29
A weekend of education, support, and traditional camp fun for the whole family! This weekend is open to individuals with an inherited bleeding disorder and their immediate family/household members only.
Camp Youngblood at Camp Holiday Trails | Sunday, July 8 - Friday, July 13
A week-long overnight camp for children with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community. Kids enjoy a week of fun and learning with others that are faced with similar challenges and life experiences. Applications due April 30th and there is a $25 application fee.
What Camp Holiday Trails has to offer: Canoeing, Fishing, Nature Trails, Climbing Wall, Arts & Crafts, Drama, Music, Dance, Sports, Cabins with AC, Delicious Meals, Campfires, Fully Equipped Med Korner, and more ...
How to register: Space is limited, go to www.campholidaytrails.org and click on the "Apply To Camp" button on the top right corner of the page to register for both Family Weekend and Camp Youngblood.
For information contact Camp Holiday Trails: 434-977-3781 or
These events are for members of the inherited bleeding disorder community that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area.
|
Save the date for our upcoming signature spring fundraiser, Hope Blooms! This afternoon of hope, renewal, celebration and inspiration will be held at the beautiful
Boathouse at Rockett's Landing in Richmond on Sunday, April 22nd. Attendees will enjoy delicious heavy hors d'oeuvres, drinks and an amazing live and silent auction plus fun games and raffles.
Some Highlights of this Year's Live and Silent Auction Include:
- Orlando Trip with Tickets to Disney World
- Elton John Concert Tickets
- Richmond International Raceway Tickets for Fall 2018
- Gift certificates to restaurants, cultural attractions, and more!
This will be the social event to kick off the spring season! Tickets will be $40 for a single and $75 for a couple. This event is open to those age 21 and older.
|
Advocacy Training and Richmond Days
Ann Kendall | Advocacy Work Group Committee Chair
Cold temperatures helped to buoy the huddle of 70 members of VHF as we came together over MLK weekend to learn what's on deck for both state and national policy agendas. Many thanks to Miriam Goldstein from HFA for leading our national discussion on the upcoming federal landscape and Becky Bowers-Lanier for the primer on state issues and bills. Kim Bobo of the Virginia Interfaith Policy Center, launched the Monday lobbying effort with motivational and inspiriting words as we set forth: believe in change, claim power and be persistent. Of special note is a resolution proposed by new Delegate Dawn Adams, for declaration of March as Bleeding Disorders Awareness Month in Virginia; if you'd like to know when this resolution comes to the General Assembly floor, please let us know.
State Issues to Watch:
Step-Therapy: VHF along with HACA support HB 386/SB 574. "
The measure establishes clinical review criteria used to establish such protocols and requires carriers to establish a process by which a patient or provider may seek a step therapy override exception determination." For full text of these bills, click here.
Healthcare Access for all Virginians: VHF and HACA are part of the HAV Coalition (Healthcare for all Virginians) and support the opportunity for 300,000 uninsured Virginians to receive healthcare. To follow this issue, check the
HAV website as several bills cover this issue.
For Lobbyist in a Box, Virginia's bill tracking system,
go here.
Continue to watch your email, Facebook and other social media for updates on General Assembly, calls to action and upcoming agendas. Thank you all for your persistence!
|
Educational Dinner - Chesapeake
Shelly Garcia | VHF Member
On the evening of Thursday, January 25th, VHF hosted an educational dinner with nurse educator Linda Pollhammer. This was the fourth educational dinner at Cutlass Grille in Chesapeake and the presentation was entitled "
Exploring Emotional Well-being in the Hemophilia Community". Fellow VHF families joined together for a delicious meal, and open floor discussion about how their emotions are affected in dealing with a bleeding disorder. Some of the key points addressed in the presentation included:
- Recognizing the signs of stress, anxiety and depression
- Establishing positive coping mechanisms
- Treating your emotional health equal to your physical health
This topic was super relatable to the VHF families that night, and they were able to voice their concerns and share some personal experiences. All that were present that evening left more knowledgeable and in touch with their emotions, along with a more than full belly!!!!!
Thank you to our sponsor Pfizer.
|
SCHOLARSHIPS
LYMAN FISHER SCHOLARSHIP
The Virginia Hemophilia Foundation's (VHF) Lyman Fisher Scholarship was established to honor Dr. Lyman Fisher: a teacher, researcher, and clinician in hemostasis who for many years directed the adult hemophilia program in Virginia. Applicants must have participated in VHF activities and live in the territorial jurisdiction of VHF. Scholarships are one-year awards in the amount of $2,000 for a full academic year.
Application Deadline: May 1, 2018
EDUCATIONAL SCHOLARSHIP TO ATTEND A NATIONAL MEETING
VHF is pleased to offer Educational Scholarships for National Meetings. National Meetings enable our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most relevant developments in treatment and technology. It is the premier opportunity for networking and support for individuals and families affected by inherited bleeding disorders. Application Deadline for NHF Annual Meeting: March 12, 2018
Check out these sites for additional scholarships offered in the bleeding disorders community:
|
HFA SUMMER ADVOCACY INTERNSHIP
Imagine the opportunity to gain excellent experience in policy and government relations, make connections that may last a lifetime, and list a quality internship with a national nonprofit on your resume. Stop imagining and apply for
HFA's Summer 2018 Policy and Government Relations Internship
in Washington, D.C. Interns live in D.C. for 10 weeks from May to August to work on projects related to policy and advocacy, attend congressional hearings and meetings on Capitol Hill, and much more! The internship is open to college students 21 and over or recent college graduates from the bleeding disorders community with a demonstrated interest in policy, government relations, and/or advocacy.
More information and application instructions are available.
Apply now and share this opportunity with your friends in the community!
|
|
NHF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC)
With so many new and exciting medications and treatments in the bleeding disorders community we wanted to remind you about NHF's Medical and Scientific Advisory Council (MASAC).
Go here to learn more.
Each year, MASAC establishes standard treatment guidelines. These are often referred to by international experts, medical schools, pharmacists, emergency room personnel, insurance companies and many others.
MASAC is composed of physicians, scientists and other medical professionals with a wide range of expertise on bleeding disorders, blood safety and infectious disease. It also comprises the chairs of NHF's nursing, social work, and physical therapy working groups and consumers. MASAC usually meets two times a year to issue recommendations, which are then sent to the NHF Board of Directors for approval.
|
|
VHF HAS BEEN DESIGNATED AS A BBB ACCREDITED CHARITY BY THE BETTER BUSINESS BUREAU SERVING CENTRAL VA
VHF meets all 20 BBB Standards for Charity Accountability, which encompass governance & oversight, effectiveness measurements, finance, truthfulness of appeals, and transparency. BBB Wise Giving reports based on these holistic standards help donors give with confidence and strengthen trust in the charitable sector.
BBB Charity Accreditation demonstrates our commitment to excellence and assures the public that their donations to VHF are being handled responsibly and ethically.
Only charities that meet all 20 standards are designated as BBB Accredited Charities. In addition to a thorough questionnaire, VHF provided BBB with its latest audited financial statements, IRS Form 990, a copy of its annual report, and other documents, all of which were subjected to a vigorous and exhaustive review. You can see VHF's report here.
|
|
|
|
|
|