Grassroots Efforts for Eating Disorder Support and Recovery in Alaska
By Beth Rose, Co-Founder of the Alaska Eating Disorders Alliance
The expression “eating disorders know no boundaries” rings true in Alaska, a state the size of Texas plus California plus both Carolinas, Florida and Maine. As with rural areas in the contiguous 48 states, Alaskans with an eating disorder and their support network are often isolated and don’t know where to turn.
In Alaska, few medical or mental health professionals have adequate education or experience with eating disorders, and none is a credentialed specialist. Lack of professional training may lead to delayed diagnosis and failure to refer to appropriate level of care for treatment. The closest treatment center for in-patient, residential, or partial-hospitalization is 1,500 air miles and a 3-hour flight from Anchorage, Alaska’s largest city, but may be 10 flight-hours, not including layover time, for more remote communities. Individuals who connect to resources out of state for higher levels of care return to a place where there is no step-down outpatient treatment and no local training for families or friends to support their loved ones in recovery.
Finding others who are going through this harrowing journey is next to impossible, not only because of HIPAA privacy regulations but because of the shame, stigma and secrecy associated with eating disorders.
I know this to be true from a very personal basis since my daughter struggled with an eating disorder in her teens and into her early 20s. My husband and I were fortunate to find treatment for her, however in the midst of her eating disorder, we were overwhelmed by the day-to-day challenges of learning how to provide effective support, manage medications, find a dietitian who didn’t just specialize in diabetes, address triggering class assignments such as BMI monitoring, work with insurance, find personal support, navigate the many ups and downs of eating disorder struggles and recovery, and continue to give attention to our adolescent son, who was dealing with his own teenage issues.
After our daughter went off to college, I continued to stay active in two closed eating disorders family/friends Facebook groups since ED continued to be a danger. By sheer coincidence through one of those FB groups, I discovered that Jenny Loudon, a friend of mine, was in the same unfortunate club as I was. We talked about how helpful it would be for others if we could start an ED support and education program in Alaska. In 2019, we began those efforts in earnest. Jenny and I were a good match not just personally but because our combined backgrounds in nonprofit management, fundraising and grant writing allowed us to think strategically about a grassroots start-up. We felt that if we could help one family or one individual affected by ED, our efforts would be worth it.
In April 2019, our efforts to start the new Alaska Eating Disorders Alliance (AKEDA) were underway. My first step was to write a prospectus to articulate a vision for the new organization, goals, activities, proposed partners and potential funders. This prospectus allowed us to start with a common language and purpose, even though we knew it might be refined in the coming months. It also allowed us to engage in more serious conversations with therapists, educators and others who might have an interest in this new organization.
Though we hadn’t yet formed as an organization, we envisioned the Alaska Eating Disorders Alliance as “a coalition of individuals, families and friends; providers, health policy experts, educators and others who are dedicated to raising awareness about eating disorders; offering resources and support; promoting education, prevention, early intervention and body positivity; and advocating on eating-disorder issues and funding.”
While there are few resources in Alaska, we wanted to connect with and ideally leverage the resources of the many established national and international nonprofits focused on eating disorder support, education and advocacy. We also wanted to ensure AKEDA would be sustainable for the long-term, knowing its success will depend on the active involvement of volunteers and professionals across the state.
Should we organize as a nonprofit?
With approximately 6,000 nonprofits already in Alaska, we strongly considered not creating a new start-up nonprofit. Instead, we looked into whether we could organize as a chapter of a national organization and reached out to Families Empowered And Supporting Treatment for Eating Disorders (F.E.A.S.T) and the National Eating Disorders Association (NEDA). We learned that chapters are not available through either organization. However, Jenny and I were invigorated by F.E.A.S.T.’s interest in partnering and supporting our efforts. We were also thrilled to learn that if we achieved our nonprofit status, we could join the NEDA Network, a partnership between NEDA and other mission-aligned organizations dedicated to advancing the field of eating disorders. The NEDA Network offered dialogue with other organizations, mutual support, credibility and potential funding.
Jenny and I took our prospectus to the President/CEO of the Foraker Group, a consulting, education and advocacy organization for Alaska’s nonprofit sector. The CEO confirmed that there was no other organization in Alaska addressing eating disorders and encouraged us to start a nonprofit. Knowing that a critical gap in medical and mental health existed in Alaska, we decided to move forward with creating a nonprofit.
Establishing a core group of supporters
We began to seek out a core group of people dedicated to supporting organizing efforts.
Some, like us, are eating disorders “experts by experience” — parents, family members, or friends who have gained solid first-hand ED knowledge from supporting a loved one. We connected with someone who had coordinated two NEDA walks several years ago. Families from other regions of Alaska shared their treatment stories and expressed support of AKEDA’s vision.
We spent several months reaching out to individuals locally who were either professionals in the ED field or “experts by experience,” parents or friends who had gained hard but solid first-hand knowledge about ED from supporting a loved one.
Some supporters of AKEDA are professionals. Therapists encouraged our efforts. Grace Ray Schumacher, a registered dietitian, had been promoting eating disorders awareness for professionals in Alaska with the support of the International Federation of Eating Disorders Dietitians and the Eating Disorders Coalition. She had written an op-ed news article for World Eating Disorders Action Day and had recently launched the Alaska Chapter of the International Association of Eating Disorder Professionals. Grace began participating in AKEDA planning activities, eager to assist in collaborative efforts between organizations.
“We are all in this together”
In May 2019, six Alaskans involved with ED professionally or personally gathered for an initial meeting to discuss the options for launching AKEDA. Not everyone at the meeting wanted to be on the board, although everyone said they would be willing to help in one capacity or another. Jenny and I made the promise to everyone that we would handle the day-to-day affairs of AKEDA.
Through the summer months, Jenny and I spoke with ED leaders and nonprofits in other cities. I went on a site visit to the Eating Disorder Foundation in Denver, and we spoke by phone with representatives of WithAll, the Alliance for Eating Disorders Awareness, Missouri Eating Disorders Coalition, the Carolina Center for Eating Disorders, Realize Your Beauty, Dr. Laura Hill, and JD Ouelette, an eating disorders advocate.
Each person we spoke with was extremely helpful and collaborative. They were willing to share resources, materials and contacts, expressing the conviction that “we are all in this together.”
At that point, Jenny and I dove in to handle the myriad details needed to form a nonprofit. Using templates and enlisting the volunteer review of an attorney, we developed bylaws and articles of incorporation. We hired a graphic artist to create a logo for AKEDA. We researched other mission statements and then crafted our own. We reviewed websites for models. We drafted a budget and outlined a budget. We came up with an 18-month outreach plan. We recruited two board members in addition to ourselves: Grace Schumacher, RD, and Katie Kadjan Bell, LPC, ATR, a therapist who specializes in eating disorders.
On September 6, 2019, we held our first Alaska Eating Disorders Alliance meeting to elect the board members and approve all necessary paperwork. We were official — almost. Following the board meeting, we filed the bylaws and articles of incorporation with the State of Alaska, obtained a Federal Employer ID number, got a State of Alaska business license and filed for the IRS nonprofit status, which we received effective September 25, 2019
Two months later we added another board member, Evelyn Abello, a newly retired therapist who had worked with Alaska Native women in an addiction facility. We were now on our way to serving Alaskans!
Now that we were a new nonprofit, AKEDA followed distinctly traditional and non-traditional paths to promote our identity. On the traditional side, we developed a website, created Facebook and Instagram accounts, and created a professionally designed one-page flyer. Jenny found conferences which we could attend and have a presence. In October 2019, we staffed a table alongside other health organizations at the Alaska School Health and Wellness Institute conference. Coaches, teachers and nurses were glad to know this new organization existed and quickly took our supply of handouts and business cards.
The non-traditional approach involved me participating in a local storytelling event similar to the “Moth Radio Hour.” I had timed my story to be in November ahead of Thanksgiving, since that is one of the most difficult holidays for people struggling with ED. From the stage, I shared a personal story about my own eating disorder as a teenager and my path to recovery in front of a live audience of 700 people and the ability to reach 30,000 to 40,000 more through a podcast and radio broadcast. I told my story with the intent of being open, reducing stigma and shame, and to letting others know they are not alone. I was no longer sitting behind an organizational name; I was publicly and proudly associating myself with a new organization dedicated to providing resources to help Alaskans address and overcome eating disorders.
Our efforts have continued fast and furious since we incorporated as a nonprofit. Grace and I attended the Renfrew Foundation Conference in Philadelphia in November, where we were able to hear and learn from many leaders and researchers in the ED field. AKEDA launched a Giving Tuesday effort and raised nearly $5,000. And in December, I was excited to receive Body Project facilitation training at NEDA to be able to share this evidence-based prevention program with adolescent and young women in Alaska.
The board members of AKEDA and I are excited about the year to come. Following a 2020 planning session, we are ready to launch a number of activities in our first full year of operations. Our planned activities include a fundraising event with an educational component on eating disorders, a community reception to build connections with potential partner organizations, peer-led family/friend support groups, Body Project facilitated sessions and a pilot eating disorders summit. We are also planning attendance and presentations at several local conferences where we can begin the process of educating providers, doctors, coaches, teachers, and others who might be involved in the prevention, identification, or treatment of individuals affected by ED.
It has been an intense and meaningful eight months since we began conceptualizing the Alaska Eating Disorders Alliance. I am so grateful to be part of this journey and to be working alongside a team of talented and committed board members who want to ensure that eating disorder resources and support are available in Alaska.
About the author:
Beth Rose, MPA, has worked in the nonprofit sector for more than 25 years. Her roles include serving as Executive Director for Alaska Junior Theater, Assistant Vice Chancellor for Development for the University of Alaska Anchorage, as Vice President of Philanthropy and Communications for the Alaska Community Foundation (ACF), and as a fundraising consultant. Prior to her nonprofit career, Beth worked in public relations and media production.
Before co-founding the Alaska Eating Disorders Alliance, Beth had never started a nonprofit and has found the process to be immensely rewarding. She is excited to work with the AKEDA board and use her non-profit and communications experience to build a strong and lasting organization dedicated to eating disorder support, education and advocacy.
Both Beth and Jenny are willing to be resources to other individuals who are interested in starting an eating disorder-focused organization in their community since “we are all in this together.”