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Hemo Alliance Newsletters

Notes from the Community, May 2024

Notes from the Community
  • Hemophilia Alliance Foundation Announces Innovation Grant Cycle


  • The Hemophilia Alliance Foundation (HAF) is excited to currently offer Innovation Grants with the purpose of providing our community with resources to improve the lives of patients with inherited bleeding and thrombotic disorders. These grants allow funding up to $50,000 per grant with priority being given to new projects aimed at expansion of capacity, collaboration (between two or more organizations), and innovation. Eligible organizations must operate under IRS tax exemption 501(c)(3) or other nonprofit status and would include local chapters, member organizations, HTCs, national organizations, and the eight HHS-designated regional core coordinating centers.

    Applications must be submitted online between May 1 to July 19, 2024 at https://hemophiliaalliancefoundation.org/grant-information. The grant-funded year runs from September 1, 2024 to August 31, 2025. Please find more information in the announcement about the Innovation Grant. The Hemophilia Alliance Foundation encourages the Regional Core Coordinating Centers to consider submitting a grant application.

    Please contact Ralph Gruppo, MD, Chairman, HAF Grants Committee at ralph.gruppo@fuse.net or (513) 582-4433 with any questions.


  • Mental Health Art Contest for Adolescents for Adolescents with Heavy Menstrual Bleeding – A Quality Improvement Initiative
  • by Ellen Riker, Artemis Policy Group

    In 2023, the Hemophilia Alliance Foundation awarded a grant to the Gulf States Hemophilia and Thrombosis Center and University of Texas McGovern Medical School to explore the use of art therapy in treating heavy menstrual bleeding (HMB) patients seen in the Young Women with Bleeding Disorders (YWBD) clinic at the HTC. The goals of the project were to assess improvement in depressive symptoms and to raise awareness about the emotional/psychological benefits of art therapy.

    The study was presented as a poster at the World Federation of Hemophilia, World Congress 2024, Madrid, Spain. For more information, contact Sabrina Farina, Sabrina.Farina@uth.tmc.edu or Marisela Trujillo, Marisela.Trujillo@uth.tmc.edu at Gulf States.


  • 4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Update
  • by Karen Bowe-Hause, Director Member and Community Relations

    As you know, Hemophilia Alliance is again collaborating with NBDF in support of their 2024 Unite for Bleeding Disorders National Walk campaign and has launched the 4th annual HTC Wall of Walkers Challenge. The objective of our collaboration is to increase HTC participation in the NBDF Walk program to provide support for local Chapters. HTCs currently registered for the 2024 Unite Walk are posted below. So far this year, we currently have 12 teams registered with a total of $8,200 raised. Here is the link to the website page that lists all of the walks: National Hemophilia Foundation – Upcoming Events (uniteforbleedingdisorders.org). To register your HTC, select the walk you’d like to register for and then you’ll be taken to the event page where you can register.

    As a reminder, NBDF has created re-stickable vinyl decals (sample attached below) that can be distributed to your patients during routine clinic visits to encourage support of your walk. Please use this link – https://forms.hive.com/?formId=FCuvHs35FjaT5SDMP if you would like to request vinyl decals for your Center.

    All Alliance member HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NBDFs website as well as on the Alliance website. The HTC team name along with photos or a logo will be featured in a scrolling fashion and the site will be continuously updated throughout the walk season. In addition, a $1500 travel grant will be awarded to 5 member HTCs raising the most funds for their local Chapters, to offset expenses to send a staff member to the 2025 NBDF Bleeding Disorders Conference, September 12 – 14 in Atlanta, GA.

    The Hemophilia Alliance thanks everyone for your participation and efforts to benefit your local Chapter.



Also in this Issue…

Jeff Weighs In

Marketing and Operations Team Update
· Spring Is In The Air
· Upcoming Webinar and Meeting Schedules

Advocacy and Legal Update
· Hill Day Alumni’s Comic Book, “What is Factor 8?”, Featured on the News

Member and Community Relations Update
· HANS Agreement with Emerging Therapy Solutions (ETS) for Gene Therapy Products

Washington Update
· HHS Final Rules Strengthen Protections for People with Bleeding and Clotting Disorders
· Biden Administration Releases Final Rule to Crackdown on Harmful “Junk Insurance” Products

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

NameEmailPhone
Jeff Blakejeff@hemoalliance.org317-657-5913
Jennifer Borrillo, MSW, LCSW, MBAborrillo@hemoalliance.org504-376-5282
Jeff Amondamond@hemoalliance.org608-206-3132
Jennifer Andersjennifer@hemoalliance.org954-218-8509
Angela Blue, MBAangela@hemoalliance.org651-308-3902
Karen Bowe-Hausekaren@hemoalliance.org717-571-0266
Zack Duffyzack@hemoalliance.org503-804-2581
Michael B. GlombMGlomb@ftlf.com202-466-8960
Johanna Gray, MPAjgray@artemispolicygroup.com703-304-8111
Kiet Huynhkiet@hemoalliance.org917-362-1382
Elizabeth Karanelizabeth@karanlegalgroup.com612-202-3240
Kollet Koulianos, MBAkollet@hemoalliance.org309-397-8431
Roland P. Lamy, Jr.roland@hemoalliance.org603-491-0853
Dr. George L. Oestreich, Pharm.D., MPAgeorge@gloetal.com573-230-7075
Theresa Parkertheresa@hemoalliance.org727-688-2568
Mark Plencnermark@hemoalliance.org701-318-2910
Ellen Rikereriker@artemispolicygroup.com202-257-6670