by Ralph Gruppo and Amy Marquez, Hemophilia Alliance Foundation

The Hemophilia Alliance Foundation is excited to announce this year’s recipients of the Innovation Grant! Thanks to the Hemophilia Alliance and The Alliance Pharmacy for their support and generous donations, we were able to again award three organizations with $50,000 each to fund their innovative grants.

Congratulations to:

• University of Colorado Hemophilia and Thrombosis Center – Their project aims to develop a physical therapy home program designed to improve ankle proprioception in persons with bleeding disorders. Loss of ankle proprioception has been implicated in playing a role in the repetitive bleeding cycle in persons with hemophilia.
• Western Pennsylvania Bleeding Disorders Foundation – This is a collaborative project between Western and Eastern Pennsylvania Bleeding Disorders Foundation. Their project aims to provide an outreach program to women with the potential to menstruate, providing education on bleeding disorders in women. The project plans to collaborate with local college centers, school nurses, county health clinics and OB/GYNs.
• New England Hemophilia Association (NEHA) – For this project NEHA will be working with the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) which was founded in 2022 with the mission to advocate for equitable access to appropriate substance use and mental health treatment facilities for all individuals with bleeding disorders. Currently, persons with bleeding disorders who require infusion therapy have for many reasons been denied access to appropriate substance use and mental health treatment facilities, particularly inpatient facilities. Since its founding, BD SUMHAC has demonstrated significant progress in this area working on the state level within five participating states. This grant aims to expand BD SUMAC’s advocacy activities to other states and on the federal level.

We’re excited to see how these projects take off! Thanks to all of the organizations that applied for this year’s Innovation Grant. It’s great to see all of the passionate ideas people have to help improve the lives of patients with inherited bleeding and thrombotic disorders.

by Madonna McGuire-Smith, Executive Director, Pacific NW Bleeding Disorders (PNWBD)

On Thursday, August 17, about 60 people gathered in the Lobby at the Bleeding Disorders Conference in National Harbor, MD for a Youth Effectively Transitioning to Independence (YETI) reunion event. All attendees were given a chance to mark their place on a US map with a butterfly needle – the butterfly needles were a big hit! The event was a great opportunity for people to reconnect that have attended YETI previously and for those who wanted to learn more about YETI so they can attend in the future. It was great to see HTC staff, local bleeding disorder organization staff and some of our previous teen participants. We are very thankful for the support of The Hemophilia Alliance in helping to make the reunion happen.

YETI is a national conference hosted at a camp nestled in the forest just outside of Portland, Oregon. YETI supports the development of bleeding disorder specific teen programming. The conference brings together HTCs, local bleeding disorder organizations and community members for a weekend long experiential train the trainer program. The conference is split into two tracks, a teen track and an adult track. The adult track consists of HTC and local bleeding disorder organization staff that spend the weekend going through a teen program, while along the way stopping and discussing the best ways to develop an effective and safe program. The teens get to experience a teen only track, meeting other teens from around the country, discussing leadership opportunities and learning what it takes to create a program in their home state. Throughout the weekend both tracks get to intermingle and learn from each other. The YETI conference is entering its eight year in 2024. More than 250 participants from local bleeding disorder organizations and HTC’s across the country have attended. More than 105 bleeding disorder entities have been trained through participation at YETI. More than 24 bleeding disorder teen programs have started or been enhanced as a result of YETI. Nearly 1600 people have been impacted, either directly by participating in YETI or indirectly as a result of someone being trained at YETI.

Registration for YETI 2024 opened October 2. All HTCs are encouraged to contact their local bleeding disorder organization to find out more about putting a team together to attend YETI. To register, go to: https://form.jotform.com/PacificNorthwest/YETI2024adult. The registration requires the HTC and local organization person register at the same time so be sure to contact your local bleeding disorder organization. There have been a large number of early registrations so don’t delay in getting registered – there is a limit to how many people can attend YETI. You don’t want to miss out on all the fun!!
YETI 2024 will be February 22-25th. For more information, please go to https://pnwbd.org/yeti/