When Dawn Rotellini started the Rocky Mountain Hemophilia and Bleeding Disorders Association in Bozeman, Montana, 15 years ago to serve families in Montana and Wyoming, she did so out of desperation. She simply wanted to meet another family like hers. Her son, Gino, then 1, had been diagnosed with moderate hemophilia B. “I didn’t even know where any other families lived, or if there was anyone else in the state,” she says.
Slowly, Rotellini figured out how to create a 501(c)(3) nonprofit and recruit a board of directors. Then she named herself chapter president. But being a volunteer chapter with limited resources meant she couldn’t serve all those families as effectively as she wanted without outside help. There wasn’t enough money or staff to reach out to and identify everyone who might benefit from the chapter.
“The National Hemophilia Foundation (NHF) doesn’t directly serve people with bleeding disorders, chapters do,” says Rotellini. She now lives in Pittsburgh. She is vice president for Chapter Services and education. The best way for NHF to make a difference is by equipping its chapters with what they need, Rotellini says.
Those needs are being met through NHF’s Access to Care Today, Achieving Cures for Tomorrow (ACT) initiative, a six-year-old program that lays out a blueprint for chapters like the one Rotellini started to meet the needs of people with bleeding disorders. The ACT initiative aims to ensure every person with a bleeding disorder—whether he lives in Missoula or Manhattan—has access to the same quality care.
Six years, massive growth
NHF’s ACT Initiative launched in 2008 with the goal of building a strong footing for the organization in five areas: government awareness and support; education for all life stages; access to care at hemophilia treatment centers (HTCs) and beyond; research and training; and strong local organizations. The leadership of NHF realized it couldn’t achieve the first four pillars if it didn’t put some heft into the fifth. So it started offering support and funding to chapters that would work toward those same goals.
Since ACT’s inception, the number of chapters has increased from 34 to 52. In 2008, only 20 of the 34 chapters had paid staff. Some salaries for the new staff were paid, at least initially, through seed grants provided through the ACT initiative. Now, all but two chapters have at least one paid staff person.
The new system contrasts sharply with how things used to run between NHF and its chapters, says Michael Craciunoiu, director of chapter development in NHF’s Chapter Services department.
“Chapters had to pay annual dues to NHF,” says Craciunoiu. When Val D. Bias became NHF’s CEO, changes were in the air. Craciunoiu recalls Bias saying, “We’re not going to charge anyone anything. In fact, we’re going to build a chapter services department that asks, ‘What can we do for you?’”
Although chapters had many ideas on how to improve local outreach and programs, they often lacked the resources to implement them. Capacity-building grants were the answer. So far, more than $1 million has been earmarked for these grants.
The grants are unique from a funding perspective: Chapters submit requests for funds that will help them support the ACT initiative’s goals and their own chapters. Each grant is for two years. Chapters receive full funding the first year and 50% the second year. During the second year, chapters solicit funds to provide the other half of that funding, another unusual aspect of the funding structure. “That way, the staff position can be sustainable into the future,” Rotellini says.
Follow the chapter track
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Rotellini remembers attending NHF’s Annual Meeting years ago but not finding a chapter track. “I’d just pick whatever consumer topics might be of interest to my folks at home,” she says. “There was nothing for me as a chapter president.”
All that has changed under the ACT Initiative. The chapter track has quadrupled, from four sessions to 17.
The goal of these practical sessions is to make chapters more efficient and the programs they offer more powerful for those they serve.
When Joe Kleiber was hired as senior vice president for Chapter Services in 2008, he discovered that most chapters were not operating as a business. Changing this became his top priority, he says. “The main thing we’ve been able to do in the past six years is provide business precepts to the chapters,” he says. “In this day and age, you have to give your consumers what they want and need.”
An important step in fleshing out the department was the hiring of regional directors for Chapter Services, each with experience running local chapters. Among them were Rotellini and Michelle Rice, now NHF’s vice president for public policy and industrial relations. Rice had been the executive director of Hemophilia of Indiana in Indianapolis.
Chapter Services then started training staff on financial sustainability. In Annual Meeting sessions and biannual leadership trainings, chapter executive directors and board presidents learn about successful programs run by other chapters. They also are schooled on the basics of fundraising. For instance, they learn how to host an annual appeal and how to work with NHF’s grant writer to apply for outside industry grants. Some find out how to participate in the annual Hemophilia Walk, others learn how to enlarge the Walk they’ve already begun, and still others reach beyond their families for donors and participants. Further, participants discover how to transform Walk donors into regular donors for their chapters.
Raising all boats
Kristin Hokoyama is development manager of special events and national Walk event manager for NHF. She has observed rapid growth in the Walk program in the past few years. Twenty-three chapters, with new chapters bringing in some of the most money, she says, have raised more than $8 million. The New York City chapter, for instance, is the biggest single donor, raising $250,000 in 2013. But even smaller chapters can make a difference. The Rocky Mountain chapter nearly doubled its efforts, raising $26,000 in 2012 and $40,000 in 2013. And, by increasing participation in the Walk, that chapter is bringing people together who might otherwise have difficulty connecting because of the rural nature of the community.
Building enthusiasm among boards of directors about the changes was another ACT priority. Executive directors and presidents who felt inspired by Annual Meeting and leadership trainings sometimes came home to find that their boards of directors didn’t understand or accept their new ideas. Quickly, NHF brought chapter board members into the fold. At dozens of board development retreats in the past few years, NHF hired facilitators to help board members and staff work together to make their ideas a reality.
All of these efforts have strengthened chapters. They are providing more programs and reaching more people with bleeding disorders, fulfilling their and NHF’s mission.
Now that the financial foundation has been laid, chapters need to build on it. “Before the ACT Initiative, a lot of chapters were underwater, struggling to continue their camp funding, getting people to events, surviving financially,” says Rotellini. Today, chapters are more stable, but there’s more work to be done, she says.
Balancing act
Keeping things in balance is critical to the success of NHF’s chapters, says Rotellini. That means balancing funding from inside and outside the bleeding disorders community, and from inside and outside the pharmaceutical industry. It also means finding balance on chapter boards of directors and between chapters, HTCs and the national office. “It’s about being sustainable,” Rotellini says. “We want them to be there for decades to come.”
Traditionally, chapters have received almost all their money from the specialty pharmacy and pharmaceutical companies that make clotting factor and other products. Although that funding is essential, there is room for other revenue sources, says Rotellini. “That doesn’t diminish industry funding. It just increases outside funding,” she says. “This is how we will grow.”
Chapter boards benefit when they include members outside the community, such as philanthropists, says Rotellini. “They don’t know what it’s like to have hemophilia, but they are going to sit down with the leader of their company and see if they can do more for you,” she says. “They are going to move hemophilia funding into the corporate foundation.”
Incubating innovations
Though Chapter Services has ideas on how to improve the chapters, it hasn’t forgotten that its job is to serve them. A chapter needs assessment in 2013 revealed that one of the key benefits of the leadership trainings and the Chapter Track at the Annual Meeting was the opportunity for chapter staff to meet other executive directors, and share solutions and innovations.
Face-to-face meetings are impractical, but computers are not. “One of our goals moving forward is to create a chapter intranet, where staff can log in and ask each other these questions,” says Rotellini. Other innovations are connected to supporting HTCs. Last year, NHF offered its first round of capacity-building pilot program grants to encourage chapters and HTCs to work together. The grants will allow HTCs to do everything from expanding clinic hours to offering outreach clinics in rural districts to buying telemedicine equipment. From 36 applications, NHF awarded more than $700,000 over a two-year period to 14 HTCs around the country.
Chapters are having a powerful influence on legislators in their state capitals. In the past, NHF focused on national and state policy. But now that chapters are stronger, the national office is working with them to create a volunteer base for statehouse lobbying days, says Rotellini.
“We tell chapters that they need to have a relationship with the folks at Medicare and Medicaid,” Rotellini says. “We’re working to create feasible ways to support chapters in dealing with that.”
A new era
When Amy Board started as program manager at the University of Colorado’s HTC in 2009, she was an anomaly. An actor by training, she had no personal connection with bleeding disorders but had spent several years working as a temp at the HTC. After observing the interactions of teenage boys at a hemophilia camp in Texas, comparing notes on bleeds, some for the first time, Board’s eyes were opened. “I fell in love with the community,” she says. “I wanted to bring that type of community together in Colorado.”
Two years ago, when the executive director of the Colorado NHF chapter left, Board knew right away that she wanted a chance to lead the chapter. The Colorado chapter had gone through some growing pains and conflict. Board had a goal of bringing the soul back to the chapter. That’s where Chapter Services came in. After attending Annual Meetings, leadership trainings and board retreats, the chapter’s staff has expanded its programs. In response, donations have increased and new people have been attracted to the chapter’s board of directors.
“Recently, we had an event with 50 people attending. That was unheard of before,” says Board. “They’re starting to believe that this is their community. They’re starting to step up and have a voice.”
As a result of hard work by NHF staff and the dedication of chapter staff, volunteers and board members, the ACT initiative is creating new, more powerful options for people with bleeding disorders, no matter where they live. It’s a whole new chapter in the history of NHF and its chapters across the country.
NHF is also grateful to our partners for ensuring the success of ACT: Visionary Corporate Partner and Lead Benefactor Novo Nordisk; Principal Corporate Partner Baxter; Major Corporate Partner Bayer HealthCare; and Corporate Partners Biogen Idec, CSL Behring, Grifols and Pfizer.