Facts N' Factors e-Newsletter

February 2015

The 2015 Virginia General Assembly convened on January 14th and that means it's advocacy time for the Virginia bleeding disorders community. Scroll down to read more and thank you to Miriam Goldstein for the wonderfully written recap.

Another great way we strengthen and build our community throughout the year is through our various events and programs. Go to our Upcoming Events Page to keep up with the latest additions to our calendar or scroll down to the bottom of this email. We are particularly excited about our first HFA Blood Brotherhood Event on March 14th this men's only event will feature dinner and a historic trolley tour to three of Richmond's top craft breweries. Space is limited, so RSVP today.

Finally we would like to say thank you to board member Megan Lawson for all her effort in making our 2013-2014 Annual Report look great. We have so much to be grateful for as we continue to grow our mission to serve and support the bleeding disorders community. Go HERE to read our Annual Report.

Stay warm and we look forward to seeing you at an event soon!

Get Involved

Bowling for Bleeding Disorders

Saturday, March 7, 2015

2:00 PM to 4:00 PM

AMF Sunset Lanes | Richmond VA

Our 3rd annual Bowling for Bleeding Disorders bowl-a-thon has moved to the month of March in honor of Hemophilia Awareness Month! So gather your friends and family and come out for an afternoon of fun, food, prizes, and bowling in support of Camp Youngblood at Camp Holiday Trails.

Camp Youngblood is open to children with bleeding disorders, their siblings, and children of members of the bleeding disorder community. Kids enjoy a week of fun and learning with other kids that are faced with similar challenges. It costs VHF $600 to send a kid to camp for one week and last year we sent 60 kids! Help us reach our goal of $30,000 this year by donating money, registering a team, or raising funds. Go HERE to register.

Bowl-a-thon Website

Scholarships

VHF Lyman Fisher Scholarship

Deserving members of the VHF bleeding disorder community and their families are eligible for a $2000 annual scholarship for secondary or higher education. Two $2000 scholarships are available. Applicants must have prior participation with the chapter and be a resident of Virginia or planning to attend school in Virginia.

Deadline May 1, 2015.

Go HERE for VHF Scholarship Application 2015

HFA Educational Scholarships

Each year, HFA awards scholarships to promising students in the bleeding disorders community. They are offering 4 scholarships for an increased amount of $2,000-$4,000 in three categories, Educational, Parent/Child/Sibling Educational, and Medical/Healthcare Services. Deadline April 30, 2015.

Go HERE for more information on HFA Scholarships

For other scholarships offered in the bleeding disorders community check out these websites:

Baxter Sponsors 2015 Education Advantage Scholarships

For the sixth consecutive year, Baxter Healthcare Corporation is sponsoring the Education Advantage scholarship program to help eligible members of the hemophilia community offset the costs of higher education, advance their careers, and pursue their dreams.

The scholarship program is open to people with hemophilia A or B (factor VIII or IX deficiency), including those with inhibitors (factor VIII or IX deficiency), regardless of which brand of factor treatment they use.

The program provides financial aid for a wide variety of educational options, including four-year bachelor's degrees, associate's degrees, technical/vocational certifications, as well as the GED Test.

Go HERE to Learn more...

CSL Behring's Commitment to the Bleeding Disorders Community

CSL Behring has a longstanding commitment to the bleeding disorders community, evidenced by the Gettin' in the Game Junior National Championship (JNC) program. As CSL Behring continues to advance its exciting Recombinant Factor Development program, this digital story about the JNC highlights the event and the company's thorough understanding of the bleeding disorders community.

Event Wrap Up

Advocacy Training and Richmond Days

Miriam Goldstein | HACA Member

On January 18th and 19th over 60 VHF and HACA members gathered in Richmond for the 2015 Virginia bleeding disorders lobby day.

Activities kicked off on Sunday with advocacy training. The Hemophilia Federation of America has developed a set of illustrated poster boards that give a vibrant overview of 6 decades of hemophilia history, and Rich Pezzillo of HFA opened our session by leading us on a tour of this history. (For those who missed Rich's presentation, or who want to revisit it, the HFA history boards are online at HFA's website and can be found here.) Go HERE to read more...

Go HERE to see more photos from the event

HTC News

Help My Child With Hemophilia Is Sick! Whom Should I Call?

This worksheet was developed to assist you in clarifying which conditions are treated by hematology or the HTC and which are treated by the Pediatrician. Some of you already have a grasp on when to call and not call, but this tool may be really helpful for those who are still unsure. Go HERE for a printable version.

Community News

Plant-Based Inhibitor Therapy Continues to Evolve

January 21, 2015 ~National Hemophilia Foundation

Scientists from the University of Florida in Gainesville (UF-G) and the University of Pennsylvania (U-Penn) continue to investigate an experimental, plant cell-based approach to preventing inhibitors and allergic reactions (anaphylaxis) to clotting factor therapies in people with hemophilia. Go HERE to read more...

EXORBITANT CO-PAYMENTS

McClellan: Keep vital drugs affordable

Del. Jennifer L. McClellan | February 1, 2015 ~Richmond Times Dispatch

Imagine that your 6-year-old son is living with severe hemophilia and requires consistent clotting factor treatments to stay alive. Now imagine that your health insurer dramatically increases the cost of your son's treatments, making it impossible for you to access the only drugs keeping him alive.

That's what happened to Jane Newman of Virginia Beach, who had two sons with hemophilia. She lost one son while fighting for his treatment, and is now facing a $12,000 monthly co-payment to manage the other's treatment. Jane's story is one of many. Go HERE to read more...

Fair Copay VA, led by Patient Services, Inc., is a patient-focused campaign dedicated to ensuring that Virginians who have paid their insurance premiums are able to access the medical treatments they need when they or someone in their family gets sick. Fair Copay VA is in support of a legislative solution to limit out-of-pocket costs for vital medications. Go HERE for more information

Also you can like the Fair Copay VA Facebook page www.facebook.com/FairCopayVA and follow them on Twitter www.twitter.com/FairCopayVA