Meeting the Needs of Rural Maine: Deeply Understanding the Importance of Tenacity, Commitment, and Connection
By Tracey Gideon
The Hemophilia Alliance of Maine (HAM) is one of many bleeding disorders chapters in the United States. Small but mighty, it serves patients and families living in Maine - its rural cities, towns and villages - covering just over 35,000 square miles. Ours is the chapter no one thought would, or could succeed, but 10 years later, we are stronger than ever, and we continue to make sure no one feels left out or alone.
Incorporated in 2011, HAM has worked diligently to serve the community through educating, advocating, supporting and assisting individuals and families of Maine living with hemophilia, von Willebrand disease and other bleeding disorders. We are firmly resolved to continue providing this support.
It was 2009 when Jill Packard and I met at the Maine Bleeding Disorders Center in Bangor, Maine (now located in Brewer). Although it wasn’t clear at the time, we were going to be the co-founders of the Hemophilia Alliance of Maine, we recognized within moments of meeting how important we would be to each other. We were two moms of children affected by a bleeding disorder, we both lived in a rural state, and we both felt we didn’t have the support we needed. Little did we know how impactful our meeting would become for others just like us in the Maine bleeding disorders community.
Our second meeting at Family Camp in New Hampshire was brief, direct and resolute. Demonstrating the importance of tenacity, commitment and connection, we spoke about five sentences to each other. Summed up, we said, “People in Maine need more... are we going to do this? Yes, we are... and no matter what, let’s always be honest with each other and have faith.” We recognized we were ‘Mainers,’ people who deeply value the same things—commitment, connection and hard work, and we were meant to make a difference.
You’ll hear from many organizations within the bleeding disorders community that the most important meetings often happen at a kitchen table. In many homes, the kitchen table is the place where we break bread, where we have difficult conversations and where we celebrate triumphs. It’s no different for HAM. It was at a small, quiet table that we dug deep and built an organization that recognized the people from our state who were feeling disconnected from each other and the larger bleeding disorders community.
With many obstacles in the beginning, it took a few years to establish the organization. First, the medical community and the greater bleeding disorders nonprofit community didn’t fully understand the needs of the rural state. At the time, the nearest community meetings were in Massachusetts. A minimum one-hour drive for some Mainers, with many having to travel up to 6 hours to attend!
Additional challenges presented themselves when living in a place where it gets dark at 3:30 in the afternoon, one can see up to four feet of snow for months on end, and the power goes out just about every time the wind blows. Distance made it difficult for the two of us to get together, plus we both had very young children—yes, it was difficult! With the demands of raising families and the physical distance between us, the formation of the chapter was and continues to be a labor of love.
In 2010, after a year of clearing the way, planning programs, and establishing a cooperative meeting model, we ambitiously assumed the roles of Jill as President and myself as Treasurer. A good friend, Ashley Bean, took on the role of Secretary. Others quickly stepped up to support our fledgling organization with their ongoing support, strong voices, passion and commitment. A year later, HAM took its next big leap when Justin Levesque, Lianne Lapierre and Brandi Cullen joined the board.
Fundraising and program development were the areas we tackled first. The primary programs addressed the most pressing issues. At the forefront were Hemophilia 101 and self-infusion instruction. Community driven, the programs were identified through surveys supported by the hemophilia treatment center based in Portland. The Bleeding Disorders Center of Maine is, on average, a 4-hour drive for many of its patients. Satellite clinics are now held at the Lafayette Family Cancer Institute in Brewer, reducing the extensive drive for many patients.
Early events were well attended - Family Dance, Stick and Swim, Hill Days, and Grandparents Gathering made fantastic debuts. Diving with determination into advocacy, HAM took on greater responsibility with the inauguration of Winterfest, a large annual event, introducing Hike4HAM (now the Unite Hike as part of NHF’s Unite Walk program), and creating a stronger national presence via our website and social media.
Hemophilia Alliance of Maine Winterfest
HAM advanced its progress in 2013 with the addition of Victoria Kuhn to the board. She fueled the organization’s commitment to longevity. Subsequently, HAM hired its first paid employee, Executive Director Vicki Jacobs Pratt. A committed nonprofit development professional, Vicki and the board ensured the future sustainability of the organization. Not much later, HAM was blessed with the addition of Janice Yorke and Terry Rice who drove HAM to embrace change and inspired the strength to amplify our voices.
Utilizing a network of dedicated volunteers, HAM launched PIGLET (People Interested Grassroots Local Engagement Together), a unique outreach program comprised of local sub-chapters based on geographic location. Through PIGLET, HAM facilitates meetings and educational programming for small groups of members within their own communities. These groups provide a significantly higher level of access to education throughout the state.
HAM’s greatest accomplishment is the work done through shared leadership and deep collaboration. By emphasizing our small but mighty approach and deeply valuing our partners, we have found our most success in saying YES to opportunity. Much of our work is done in collaboration with other New England chapters, as well as our care provider partners and national partners.
Today, we hold several events throughout the year to meet the needs of our regional and statewide populations. June 18th was our 10th anniversary and we celebrated with a virtual birthday party; however, we really look forward to meeting with families at our annual Unite Hike for Bleeding Disorders - our first in-person event in over a year and a half coming in September!
At an event several years ago, one grateful mom expressed, “We sometimes get so wrapped up with the woes of hemophilia. We need to keep in mind how far we have come, treatment, education and the resources we have available. We also need to remind ourselves that as caregivers we aren’t giving 100% to our affected loved ones if we aren’t also caring for ourselves. We are so grateful to have HAM for these connections and education to remind us we aren’t alone. It is comforting.”
For more info, contact:
info@mainehemophilia.org
(207) 631-7550
mainehemophilia.org
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