Notes from the Community, January 2020

Notes from the Community

Hemophilia Alliance Foundations Funds Health and Fitness Videos
By Lisa Littner, MSW, LISW-S, CHES, Education Specialist, Cincinnati Children’s Hospital Medical Center

Cincinnati Children’s Hospital Medical Center (CCHMC) identified a need for patients with hemophilia and their families to have more knowledge on healthy nutrition and the importance of safe physical activities. As part of a capstone project in my Master’s in Public Health program, I designed three YouTube videos that focus on providing education on these topics. The video format as a health education intervention was chosen because it is appeals to different learning styles and offers the ability for patients and families to receive education remotely.

To develop the videos, I worked with a collaborative team including Molly Mays, hemophilia physical therapist; Dr. Cristina Tarango, hemophilia medical director; and the CCHMC videography team. CCHMC patients and families were featured in the videos, as well as the hemophilia physical therapist and a dietician. Each video has a different theme related to health and fitness for children with hemophilia and their families.

The videos can be accessed on YouTube by following the links below. The information in the videos is not specific to Cincinnati Children’s Hospital, so other hemophilia treatment centers should be able to use these videos with their patients. Many thanks to the Hemophilia Alliance Foundation for their support with this project.

Video Links:

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Final Reminder: Deadline to Apply for the Hemophilia Alliance Foundation’s 2020 Grant is Approaching

A final reminder that the deadline to apply for the Hemophilia Alliance Foundation’s 2020 Grant is fast approaching! All application materials must be submitted through our online application system at https://hemophiliaalliancefoundation.org/grant-information by Friday, January 31, 2020.

Due to the high volume of applications, please send any questions regarding the grant application or process (including any technical questions with our new online application system) to info@hemophiliaalliancefoundation.org by Tuesday, January 28th to ensure that you receive a response prior to the application deadline.

If your organization has a great idea for a program that positively impacts the bleeding disorders community, we strongly encourage you to apply for an HAF grant. For 2020, the ceiling for local applicants (i.e. consumer-led organizations and hemophilia treatment centers) is $8,000; the ceiling for national organizations and the eight HHS-designated federally funded regional core coordinating centers is $10,000. Successful applications for both projects and patient assistance programs should demonstrate clear, measurable outcomes and a strong commitment to the bleeding disorders community. Since 2009, the HAF has awarded over $4 million to help 140+ chapters, treatment centers, and national community organizations build capacity and support and expand their missions. Hear from one of our grant recipients below:

"Funds received via the Hemophilia Alliance Foundation Grant have helped support attendance at the annual meeting of the Mountain States Hemophilia Network (MSHN). Due in part to the grant funds received, the MSHN has continued to offer the opportunity for all team members at MSHN Hemophilia Treatment Centers to attend this collaborative educational meeting without limiting registration by center or discipline. As the MSHN region crosses a large geographic swath, travel costs can be considerable. We are thankful to the Hemophilia Alliance Foundation for their assistance with these travel costs through the Foundation grant."Susan Lattimore, Regional Coordinator, Mountain States Hemophilia Network, 2019

Organizations interested in submitting applications should review the 2020 Grant Guidance thoroughly before finalizing their applications, which must now be submitted electronically via a SUBMIT button at the bottom of the application. This new system will allow for applicants to immediately receive an automated acknowledgement of receipt of their application. Please note that applications submitted as an attachment to an email will not be considered.

If your organization—or an organization you know—is interested in applying but feels like it does not have the capacity or expertise to do so, please reach out to us at the address above! We can direct you to additional resources that will help you submit a strong application.

Also in this Issue…

Notes from Joe
· 2020 Outlook
· Marketing and Operating Strategic Plan Goals for 2020
· 2020 Payer Team Goals
· 2020 Advocacy and Policy Goals

Payer Update
· A Thank You to the Hemophilia Alliance

Alliance Update
· Notes about Upcoming Alliance Meetings
· Reminder: 2020 340B Program HRSA Grantee Recertification Period Begins in January
· 2020 Meeting Schedule