Our 2021 VHF Unite for Bleeding Disorders Virtual Walk is coming up quickly and we need your help to build unity with our community!

We encourage you to go here to register to receive the Zoom link to join us on Sunday, October 17th at 1:00 pm for a fun program where we will recognize top fundraisers, enjoy entertainment from Jonathan the Juggler, and unite together as a community! We have a big goal to raise $20,000 from our event participants this year through donations, team sponsorships and matching gifts - can you help us make it all the way by joining or starting a walk team today, or making a donation to one of our wonderful teams? You have raised an amazing $8,786 so far!

Looking for coverage for the rest of 2021? Answer these questions to see if you can apply through a Special Enrollment Period. You can also enroll in Medicaid or the Children's Health Insurance Program (CHIP) any time, if you’re eligible. Coverage can begin immediately.

VHF community member Brandon Nowlan signed a national letter of intent with Old Dominion University (ODU) Athletics men’s basketball this past week, joining the squad for the 2021-2022 season. The ODU Monarchs learned that Brandon has hemophilia through assistant Kieran Donohue, who is familiar with Team Impact, an organization that links children battling illness with sports teams in order to make a positive difference in their lives (stay tuned in for more information on Team Impact in an upcoming newsletter). Such a great way to spread awareness of bleeding disorders – so proud of you Brandon!

A little more than a year after the worldwide recall of Stimate, there is cGMP manufactured DDAVP NS available in the USA. The product is being produced and distributed by STAQ Pharma, a registered 503B Outsourcing Facility. They shipped 57 vials on Monday, 9/13/2021. They are presently able to ship into 31 states across the country (see map) and are working on getting licensed nationally. This product was made possible because the Alliance Board of Directors funded its upfront development costs. Additionally, a limited number of vials are available through the DDAVP challenge program. The product will only have about 70 days dating when you get it. Subsequent lots will have increasingly longer dating.

NHF has numerous publications, brochures and tools available for download or print. These resources span across different bleeding disorders and can be used for patients and families, or sharing with schools, workplaces and extended family members and friends. Go here to learn more.

They also offer several resources for families affected by rare bleeding disorders. These resources include educational events that provide meaningful community support, informative webinars to watch on-demand, and downloadable/ printable publications and brochures. Go here to learn more.

Join family, friends and your HFA community from Monday, October 18 - Thursday, October 28, 2021 for their annual Symposium. This year's event is virtual and free to attend. They will be bringing all the great speakers, events, and information you've come to expect each year. 

Lifeline Support is a government-funded program that helps to reduce the cost of cell phones for people who qualify. If you qualify, you’ll receive a subsidy of at least $9.25 each month toward your cell phone bill and a free Android smartphone to use.

A new review article, “The Intersection of Vector Biology, Gene Therapy, and Hemophilia,” was published recently in the journal Research Practice in Thrombosis & Haemostasis (RPTH). It provides a comprehensive overview of the scientific underpinnings of several hemophilia gene therapy platforms, with particular focus on the delivery of genetic payloads at the heart of these technologies.

Date/Time: Saturday, November 6th at 4:00 pm

Location: Zoom

Participants will enjoy meaningful education and time to gather and share with other people who encounter similar challenges. This retreat is free and 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).

What to Expect: Interactive fun-filled music trivia, hints and recommendations for living a healthier lifestyle and ideas for home fitness, cooking demonstration on healthy, weeknight meals and making your own spice blend from scratch, and a HFA Rap Session.

Date/Time: Saturday, November 13th at 4:00 pm

Location: Zoom

Join constituents, advocacy committee members, and community stakeholders from throughout Virginia for an education meeting that will cover a wide range of advocacy topics relevant to the bleeding disorders community!

Date/Time: Thursday, November 18th at 7:00 pm

Location: Zoom

Join VHF for a highly interactive and engaging evening of virtual community connection and a family-friendly paint night. Painting is a great way to help pass the time and cope with stress so bring your creativity and a willingness to learn and you will paint a fall themed painting you’ll be proud to display in your home!

Date/Time: Saturday, December 4th at 2:00 pm

Location: Zoom

There will be all-ages ornament decorating (ornament kits will be shipped directly to attendees), holiday themed trivia game, special guests from the north pole, and more. Test your holiday and bleeding disorders knowledge in this spirited, interactive event. There will be banter, jests, and endless fun. Laughs are a must! Please join and share in the holiday spirit.