Until 2009, headquarters for the Virginia Hemophilia Foundation was the Richmond home of Executive Director Kelly Waters. Founded in 1975, the Virginia chapter had a long history of service to the state’s bleeding disorders community. And although the chapter had paid staff, Waters says managing its army of volunteers and coordinating fundraising, chapter events and the day-to-day operations of a nonprofit out of her home was often a struggle.
At the time, the Virginia chapter’s situation was hardly unique—several National Hemophilia Foundation (NHF) chapters relied primarily on volunteers who coped with similar challenges.
Aware that hurdles such as a lack of office space and full-time staff constrained what chapters could accomplish, NHF’s then-CEO Val D. Bias, who had begun his tenure in 2008, spearheaded a new nationwide program, a major goal of which was to assist chapters in overcoming these and other structural obstacles. Thus, NHF’s ACT initiative was born.
ACT stands for Access to Care Today, Achieving Cures Tomorrow, and over the past decade-plus it has not only bolstered NHF chapters but also influenced everything from bleeding disorders advocacy to promoting and funding research to training healthcare professionals. But in many ways, chapter support is the initiative’s cornerstone.
Because stable, active chapters provide invaluable education to individuals and families, as well as organize and motivate the bleeding disorders community at the local level, the ACT initiative has supported NHF chapters both financially, in the form of grants, and through organizational training. Thanks to an ACT grant, the Virginia chapter moved out of Waters’ house and into permanent office space in Richmond.
In creating ACT, NHF built a more effective two-way street between chapters and the national organization. The initiative gave rise to NHF’s Chapter Services department, which has helped standardize programs and staffing nationwide.
“We wanted to create consistency across chapter affiliate organizations so that a family moving from one state to another, or even while on vacation, can have the same experience and high level of service,” says Michael Craciunoiu, NHF’s vice president of chapter services.
Guiding Principles
To achieve that consistency, ACT created an overarching set of principles, outlined in five pillars: government awareness and support; education for all life stages; access to care at hemophilia treatment centers and beyond; research and training; and strong local organizations. Beyond the five pillars, the initiative included 26 standards, goals for both the national organization and NHF chapters.
Volunteers and paid staff have both been key to NHF chapters’ success. In 2008, 20 of the 34 existing chapters had at least one full-time executive staff member. NHF recognized that despite their best efforts, chapters would struggle to achieve the goals established in ACT if they didn’t have additional structure and professional support. Under a new Chapter Charter Agreement, chapters were required to meet several basic benchmarks, including having at least one full-time staff member and permanent office space.
The goal of ACT’s “strong local organizations” pillar is to develop local chapters’ capacity for advocacy and education, Craciunoiu says. Chapter Services provides coordinated nationwide support to achieve this goal. Today, thanks to the devoted work of chapter staff and volunteers, combined with NHF’s substantial investment in enhancing the national bleeding disorders community, the network has grown to 53 chapters.
The Evolution of Chapter Support
What chapters needed help with 10 years ago when they were often reliant on volunteers is completely different from what they need now, Craciunoiu says. “Back then, it was really foundational pieces—organizational structure, hiring staff, setting up websites and member and donor databases. Now, our chapters are faced with complex challenges, such as employee engagement and leadership development,” he says.
The ACT initiative had an immediate impact on the relationship between NHF and chapters, Waters says. “Before ACT and Chapter Services, when you would call NHF for support, sometimes no one would call you back. You’d go to meetings and there wasn’t any education or support,” she says. “Now, we have a strong partner we can turn to for assistance.”
Two important tools available to all chapters through ACT are board development retreats and capacity-building grants.
Board retreats strengthen chapters’ existing structures. If a chapter is struggling with governance, for example, NHF can send a staff member to the chapter, at no cost, to facilitate a board retreat on leadership or organizational structure. Capacity-building grants are given in two-year cycles. They provide financial support to expand chapter office space (or open a new office, as in Virginia) or add staff members, paying the first year of a new hire’s salary and half during the second year.
As chapters have grown, NHF’s Chapter Services department has gone from one staff member in 2009 to six today, each with his or her own subject matter expertise, such as fundraising and leadership development. “We’ve evolved to mirror the chapters’ needs,” Craciunoiu says.
One success story is NHF’s Colorado Chapter, which has seen phenomenal growth both programmatically and financially, says chapter Executive Director Perry Jowsey. In 2019, the chapter raised more than $70,000 from its Unite for Bleeding Disorders Walk, up from $20,000 in 2014. “Those things didn’t happen automatically. They happened because of programs that NHF supports,” Jowsey says.
“All of our programs and services are designed to help all chapters become 100% aligned at some point down the road with all of our best practice standards,” Craciunoiu says.
The Evolution of Best Practices
In 2016, NHF created the Chapters of Excellence (COE) program, bringing the number of chapter best practice standards to 76. Eleven are basic requirements of all chapters that sign the Chapter Charter Agreement. The remaining 65 standards fall under six COE categories: attendance at NHF-hosted training; governance and board leadership; programs and services; public policy and advocacy; research and medical information; and fundraising and development.
Chapters that earn a COE designation enjoy not only the public relations value but also awards of up to $1,000 per category. COE chapters also participate in regional meetings, paid for by NHF, that provide additional networking and training.
Waters, whose chapter has attained five COE awards, has taken advantage of several board retreats. The Virginia chapter also received two capacity-building grants. The first was to help the chapter move into its office space. The second grant, which the chapter received for the 2018-2020 grant cycle, was to hire a development director. “We’ve definitely received a lot of support from NHF over the years. I’m also one, when opportunities are available, I try to take them if they make sense. And I encourage other chapters to do the same,” she says.
“To date, we’ve offered well over $1 million in capacity-building grants to over 30 chapters,” Craciunoiu says.
Basic Chapter Requirements
All National Hemophilia Foundation chapters must meet the following basic requirements:
- Appropriately maintain federal 501(c)(3) nonprofit status.
- Support NHF’s mission.
- Participate in NHF’s annual Board of Directors election process through a ballot submission.
- Participate in NHF’s annual Washington Days advocacy event by sending at least one consumer and one chapter staff member, or an appropriate designated representative.
- Ensure board officers are not employed by an industry partner.
- Contract with or employ a minimum of one full-time staff person.
- Have representation at NHF’s annual Bleeding Disorders Conference by sending staff, board members, or individuals and families affected by bleeding disorders.
- Have at least one person participate in one of NHF’s annual Chapter Leadership Seminars.
- Participate in an NHF chapter review at least once during the three-year Chapter Charter Agreement.
- Participate in the NHF chapter needs assessment, which occurs once every three years.
- Have in place industry standards, policies or guidelines that safeguard the chapter staff and volunteers, consumers and industry partners from conflicts of interest, confidentiality and code of conduct challenges.
Striving for Excellence
For eight years, Sue Martin had been at the helm of Hemophilia of South Carolina, in Greenville. It was a part-time labor of love—of Martin’s five children, three sons have hemophilia while a daughter has von Willebrand disease and mild hemophilia, and two grandchildren have von Willebrand disease. In 2014, to meet the charter chapter requirements, Martin sold her small business to become Hemophilia of South Carolina’s full-time executive director.
Martin says the ACT and COE standards forced her chapter to reassess the way it operated. “When you’re an all-volunteer organization, there’s never enough time to get everything done. Had we not had those standards to push us, it would’ve taken a lot longer to achieve what we have,” she says.
Hemophilia of South Carolina has received five COE awards, recognitions that Martin says help her chapter in fundraising efforts. “The designation reassures potential funders that we follow best practices and that their donations will be well utilized,” she says.
Martin encourages other chapters to measure themselves against the COE standards and strive for them. “It was daunting at times, but it made us accountable for ourselves. It really pushed us to a point where we feel comfortable that we have everything in place to run a successful nonprofit,” she says.
Martin recently hired a development and communications assistant, the first full-time staff member besides herself. She says that decision wouldn’t have been possible without the structural knowledge NHF provided.
Founded in 1949, Bleeding Disorders Alliance Illinois, in Chicago, already had a strong foundation in place, says chapter Executive Director Bob Robinson, but it welcomed ACT and Chapter Services as a way to get all chapters operating consistently. “Prior to ACT, there was a divisiveness. There was the chapters, and there was NHF—and we weren’t working together,” Robinson says. “What the ACT program really did was to build the chapters up. It provided professional staff members that helped us look at where we needed shoring up.”
The chapter has received several capacity-building grants, most recently during the 2017-2019 cycle to add a development staff member. “We used the capacity-building grants and Chapter Services to improve our fundraising efforts and to better our program support,” Robinson says.
Bleeding Disorders Alliance Illinois also participated in several board retreats. “We were able to learn better fundraising skills. It was more than just the money for the development hire,” Robinson says. One seminar on how to take your passions and tell your fundraising story in three minutes still brings a smile to his face, Robinson says. “It was so inspirational and so moving and really helped us learn how we can better advocate for our members.”
Bleeding Disorders Alliance Illinois is the only NHF chapter to earn Chapter of Excellence Awards in all six categories. All these efforts, Robinson says, have contributed to a better brand identity that’s particularly helpful for the Unite for Bleeding Disorders Walk fundraiser. Robinson encourages other chapters to use the COE guidelines as a review process.
The following chapters have earned Chapter of Excellence Awards in at least one category:
- Central California Hemophilia Foundation
- Hemophilia Association of San Diego County
- Hemophilia Foundation of Southern California
- Hemophilia of Georgia
- Hawaii Chapter, National Hemophilia Foundation
- Idaho Chapter, National Hemophilia Foundation
- Bleeding Disorders Alliance Illinois
- Hemophilia of Indiana
- Hemophilia Alliance of Maine, Inc.
- New England Hemophilia Association
- Gateway Hemophilia Association
- Rocky Mountain Hemophilia and Bleeding Disorders Association
- Nebraska Chapter, National Hemophilia Foundation
- Nevada Chapter, National Hemophilia Foundation
- New York City Hemophilia Chapter Inc.
- Central Ohio Chapter, National Hemophilia Foundation
- Northern Ohio Hemophilia Foundation
- Tri-State Bleeding Disorder Foundation
- Oklahoma Hemophilia Foundation
- Hemophilia Foundation of Oregon
- Hemophilia of South Carolina
- Lone Star Chapter of the National Hemophilia Foundation
- Hemophilia Association of the Capital Area
- Virginia Hemophilia Foundation
What’s Next?
The trifecta of ACT, the Chapter Charter Agreement and NHF’s Chapter Services has fundamentally changed how NHF affiliates run. The charter agreement includes an in-depth chapter review process to ensure chapters meet the standards. To date, 40 chapters have gone through the review process.
NHF’s goals for the near future include completing the review process for the remaining chapters, Craciunoiu says. Other goals include revenue diversification, board development and leadership development.
“There’s a lot more we want to do and ever-changing needs. We want chapters to know that we’re constantly looking for improvement and ways to support them,” Craciunoiu says.
As for the chapters, which work daily to connect, educate and advocate for the bleeding disorders community, they welcome the support that helps them do their jobs better. “For someone who has worked in the field for over 30 years, it’s amazing to finally have all of us working as a team and working together and finally making real-world changes,” Robinson says. “Instead of just working for Illinois, I feel like we’re working to make an impact for all people in the United States with bleeding disorders.”