Hemo Alliance Newsletters

Notes from the Community, February 2024

Notes from the Community

4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Launch and Registration Promotion!!
by Karen Bowe-Hause, Director MCR

Hemophilia Alliance is again collaborating with NBDF in support of their 2024 Unite for Bleeding Disorders National Walk campaign and is launching the 4th annual HTC Wall of Walkers Challenge. This initiative aligns with our vision of creating a cohesive collaboration between our HTC’s, Chapters and National Organizations. Our goal is to increase HTC participation in the NBDF Walk program to provide support for local Chapters. We will publish the 2024 Walk schedule in the near future. NBDF has created re-stickable vinyl decals (sample shown below) that can be distributed to your patients during routine clinic visits to encourage support for your walk. Please use this link If you would like to request vinyl decals for your Center.


https://forms.hive.com/?formId=FCuvHs35FjaT5SDMP



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 $1000 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, location to be shared as soon as that information is made available.

Registration Promotion!!
The first 5 Alliance member HTCs that register a Walk team for the 2024 Unite for Bleeding Disorders National HTC Walk Challenge will receive a $250 campership donation to the camp of their choice!! The registration challenge promotion will run through March 15, 2023! Get moving now and get your team organized and registered!! Good Luck to all!!!

Click here to register

Also in this Issue…

Jeff Weighs In

Alliance Update
· How will you be spending World Hemophilia Day this April 17th, 2024?
· Upcoming Meeting Schedules

Advocacy and Legal Update
· Senators Release Draft Legislation to Reform the 340B Program: the SUSTAIN 340B Act

Member and Community Relations Update
· Gene Therapy – Hemophilia Alliance Network Services (HANS) Opportunity

Team Alliance Contact Information

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

Name Email Phone
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA borrillo@hemoalliance.org 504-376-5282
Heidi Lane, PT, DPT, PCS heidi@hemoalliance.org 435-659-1230
Jeff Amond amond@hemoalliance.org 608-206-3132
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@hemoalliance.org 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670