August 13, 2019
Dear Mr. Bias, Mr. Andrew, Mrs. Haugstad, and Mr. Hemann:
On Friday, August 9, the Chapter Staff Organization (CSO) executive committee sent you a letter outlining a series of key recommendations that were voted on at the CSO meeting in St. Louis. This included statements about: a potential merger of HFA and NHF; chapter leadership; national leadership; and changes to best serve the bleeding disorders community in the years ahead.
As leaders of local bleeding disorder organizations and members of the CSO, we were proud to vote on these statements during the meeting as we look forward to the future of our community. We believe that the programs and services offered by the national organizations overlap substantially and that a merger of NHF and HFA will be the most beneficial path forward to ensure one strong voice and pool of services for the bleeding disorders community at the national level.
There were 32 member organizations present at the recent CSO meeting -- 26 organizations voted to support the comment letter, 6 organizations abstained, and no organizations voted against it. Subsequently, 9 organizations that were not in the meeting have signed onto the letter to show their support of the CSO’s recommendations. In order to provide further transparency, listed below are the organizations in support of these key recommendations.
Thank you,
Present at the Meeting and Voted “Yes” as a CSO Member
1. Stephanie Simpson, Bleeding Disorder Foundation of Washington
2. Bob Robinson, Bleeding Disorders Alliance Illinois
3. Lynne Kinst, Central California Hemophilia Foundation
4. Meagan Murray, Connecticut Hemophilia Society
5. Curt Krouse, Eastern Pennsylvania Hemophilia Foundation
6. Debbi Adamkin, Florida Hemophilia Association
7. Bridget Tyrey, Gateway Hemophilia Association
8. Danielle Leitner Baxter, Great Lakes Hemophilia Foundation
9. Jill Packard, Hemophilia Alliance of Maine, Inc.
10. Susan Lerch, Hemophilia Foundation of Michigan
11. James Paist, Hemophilia Foundation of Minnesota/Dakotas
12. Michelle Kim, Hemophilia Foundation of Southern California
13. Fran Haynes, Hemophilia Foundation of Greater Florida
14. Laurie Reger,* Hemophilia Center Western NY Foundation
15. Edith Rosato,* Hemophilia of Georgia
16. Charlene Cowell, Hemophilia of North Carolina
17. Suzanne Martin, Hemophilia of South Carolina
18. Melissa Compton, Lone Star Chapter of NHF
19. Rich Pezzillo, New England Hemophilia Association
20. Jeremy Griffin, New York City Hemophilia Chapter
21. Kathleen Montgomery, Oklahoma Hemophilia Foundation
22. Madonna McGuire Smith,* Oregon Hemophilia Foundation
23. Brad Benne, Rocky Mountain Hemophilia & Bleeding Disorders Association
24. Kay Clark, Southwestern Ohio Hemophilia Foundation
25. Julie Fredericksen, Texas Central Hemophilia Association
26. Lisa Raterman, Tri-State Bleeding Disorder Foundation
Subsequent Support of the Comment Letter as a CSO Member
1. John Palmatier, Alaska Hemophilia Association
2. Emily Ouellette, Bleeding Disorders Alliance of North Dakota
3. Linda Mugford, Hemophilia Association of New York
4. Dawn Pollard, Hemophilia Foundation of Northern California
5. Tom Wilmarth, Mary M. Gooley Hemophilia Center
6. Tanya Ricchi, Northern Ohio Hemophilia Foundation
7. Carla Wells, Northwest Ohio Hemophilia Foundation
8. Teresa Nothan, Tennessee Hemophilia & Bleeding Disorders Foundation
9. Kara Dornish, Western Pennsylvania Chapter of the National Hemophilia Foundation
Present at the Meeting and Voted to “Abstain” as a CSO Member
1. Karla Digirolamo, Bleeding Disorders Association of Northeastern New York
2. Scott Ehnes, Hemophilia of Indiana
3. Stephanie Lapidow, Hemophilia of New Jersey
4. Angela Brown, Midwest Hemophilia Association
5. Ursela Kamala, Kentucky Hemophilia Foundation
6. Kelly Waters, Virginia Hemophilia Foundation
*proxy vote cast during meeting by organization’s staff and/or board member.