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Hemo Alliance Newsletters

Notes from the Community, November 2023

Notes from the Community

2023 Unite Walk Wall of Walkers update
by Karen Bowe-Hause, Director Member and Community Relations

In collaboration with the National Bleeding Disorders Foundation, the Hemophilia Alliance was proud to sponsor the 3rd annual Unite Walk Wall of Walkers campaign, designed with the intent to inspire further partnerships between our member Hemophilia Treatment Centers & their local Chapter affiliates. This year, the Walk saw a 5% increase in HTC participation with a 24% increase in HTC participants walking and an overall 14% increase in money raised to support local Chapters and the bleeding disorders community. The Alliance would like to congratulate the 2023 Wall of Walkers Top 5 Hemophilia Treatment Center teams who have earned top fundraising status for the Unite for Bleeding Disorders Walk in their assigned market! Collectively, the 37 member HTC teams organized raised more than $37,000 to support their local Chapters through this initiative in 2023. Each of the 5 top HTC teams will receive a $1,000 scholarship that is intended to be used to send a staff member to the 2024 NBDF Bleeding Disorders Conference that will be held September 12th – 14th in Atlanta, GA. The 5 winning teams are:

  1. HTC – Smells like HEME Spirit (Team Captain – Emily Mahrt) – Oregon Health and Science University Hemophilia Center, in support of the Pacific Northwest Bleeding Disorder Foundation
  2. UC San Diego HTTC (Team Captain – Frida Cortez) – UC San Diego Health, in support of Hemophilia Association of San Diego County
  3. Ortho Walkers (Team Captain – Doris Quon) – Orthopedic Institute for Children Hemophilia Program, in support of the Hemophilia Foundation of Southern California
  4. Chill Factor (Team Captain – Desiree Hill) – University of Colorado, Hemophilia and Thrombosis Center, in support of Colorado Chapter, National Bleeding Disorder Foundation
  5. Team Hemophilia Treatment Center (Team Captain – Julie Doyle) – Cincinnati Children’s Hospital, in support of Tri-State Bleeding Disorder Foundation

The Hemophilia Alliance would like to thank ALL our member HTC teams for supporting the community, the local Chapters and NBDF in one of the largest fundraising events for NBDF and Chapters across the country!!

HTC Name (City/State) Team Name Team Captain
2023 UNITE WALK (St. Louis, MO) The Coagulators – Wash U/SLCH Makenzie Sledd
2023 UNITE WALK (Cincinnati, OH) Team Hemophilia Treatment Center Julie Doyle
2023 UNITE WALK (Houston, TX) Team Frank Lindsay Oneill-Dewing
2023 UNITE WALK (Fargo, ND) Sanford’s Stop the Bleed Team Kim Rasmussen
2023 UNITE WALK (Portland, OR) HTC – Smells Like HEME Spirit Emily Mahrt
2023 UNITE WALK (Indianapolis, IN) IHTC Patrick Nushardt
2023 UNITE WALK (Boston, MA) BHC.STRONG! Clifford Haas
2023 UNITE WALK (San Diego, CA) Rady Children’s HTC Courtney Thornburg
2023 UNITE WALK (Cleveland/Akron, OH) Akron Children’s Hospital HTC Irene Boehlefeld
2023 UNITE WALK (Houston, TX) Texas Children’s Hospital HTC Trinh Nguyen
2023 UNITE WALK (Houston, TX) Gulf States Hemophilia and Thrombophilia Sabrina Farina
2023 UNITE WALK (Kansas/Missouri) KC HTC Debbie Nelson
2023 UNITE WALK (Denver, CO) Chill Factor Kimberly Hurdstrom
2023 UNITE WALK (Honolulu, HI) Blood, Sweat & Love Jason Landgraf
2023 UNITE WALK (San Diego, CA) UC San Diego HTTC Frida Cortez
2023 UNITE WALK (Los Angeles, CA) Ortho Walkers Doris Quon
2023 UNITE WALK (Las Vegas, NV) HTCNV Superstars Sean Needham
2023 UNITE WALK (Los Angeles, CA) CIBD: Time to Get Moving Grace Hernandez
2023 UNITE WALK (Pittsburgh, PA) Bubble Brigade Kathaleen Schnur
2023 UNITE WALK (Columbus, OH) OSU HTC Brittany Knauss
2023 UNITE WALK (Columbus, OH) NCH HEME TEAM Haley Miller
2023 UNITE WALK (Hiawatha, IA) Iowa Treaters Tami Bullock
2023 UNITE WALK (Cleveland/Akron, OH) UH Rainbow HTC Susan Hunter
2023 UNITE WALK (Milwaukee, WI) Team CCBD Tiffini Mueller
2023 UNITE WALK (Illinois) Rush HTC Mad Infusers Mindy Simpson
2023 UNITE WALK (Anchorage, AK) Scenic Steppers Shannon Norman
2023 UNITE WALK (Anchorage, AK) Ak Walkers Joelle Smith
2023 UNITE WALK (Anchorage, AK) ABDC Adminions Dave Groller
2023 UNITE WALK (Clifton, ME) Clinic Crew Holly Seymour
2023 UNITE WALK (Montana and Wyoming) Chill Factor Desiree Hill
2023 UNITE WALK (Anchorage, AK) Ak Bleeding Disorder Kyme Groller
2023 UNITE WALK (Milwaukee, WI) Hemophilia Outreach Center Erica Brock
2023 UNITE WALK (Omaha, NE) Children’s Hospital & Medical Center Amanda Whitman
2023 UNITE WALK (Oakland, CA) UCSF Benioff Children’s Hospital Katrina Unpingco
2023 UNITE WALK (Illinois) Amontay Glenda McFarland
2023 UNITE WALK (Los Angeles, CA) The Plasma Team Elsa Raigoza
2023 UNITE WALK (Los Angeles, CA) #Gatlingang Grayson Gatlin

Also in this Issue…

Notes from Joe

Legal Update
· Genesis Healthcare Inc. v. Becerra: District Court Invalidates HRSA’s Patient Definition and Implementation in 340B Program

Advocacy Update
· 2025 NBPP Proposed Rule Released with Positive Policies for Bleeding Disorders Community

Member and Community Relations Update
· From Frustration to Opportunity – Maximizing HANS as a Resource

Alliance Update
· Hemophilia Alliance Resources Available to Members
· 2024 Meeting Schedules

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