Notes from the Community, November 2023
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:
- 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
- UC San Diego HTTC (Team Captain – Frida Cortez) – UC San Diego Health, in support of Hemophilia Association of San Diego County
- Ortho Walkers (Team Captain – Doris Quon) – Orthopedic Institute for Children Hemophilia Program, in support of the Hemophilia Foundation of Southern California
- Chill Factor (Team Captain – Desiree Hill) – University of Colorado, Hemophilia and Thrombosis Center, in support of Colorado Chapter, National Bleeding Disorder Foundation
- 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…
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
Comments are closed.