Rare Leader: Linda Hageman, Founder and Executive Director, AMENSupport
August 23, 2018
Name: Linda Hageman
Title: Founder and Executive Director
Disease focus: Multiple endocrine neoplasia (MEN) is a genetic mutation that allows tumors to grow. The mutation prevents the body from recognizing abnormal cells. These abnormal cells are usually in the pituitary, parathyroid, and the pancreas. These can tumors can metastasize and grow at an earlier age than once thought.
Headquarters: Maryville, Tennessee
How did you become involved in rare disease: This rare disease has been in my family for years and years. I have relatives who died from it, and I have this disease. I started the foundation when I had my pancreas removed and found I could not go back to my career as a nurse. My husband saw my passion for helping others and knew I needed to focus on something that would be of benefit to others. He thought of creating a nonprofit with an unexpected inheritance we received, and the idea for the Hageman Foundation, which grew to become AMENSupport, was born. After we did a strategic plan, we took the idea to our friends at Mayo Clinic, who were very enthusiastic and encouraging, so we forged ahead. The social media group at Mayo Clinic even helped me learn about Facebook, websites and how to reach people who needed information and emotional support.
Previous career: I am a registered nurse and worked in nursing during my career.
Education: Nursing degree from the University of Michigan and B.S. in science from Broward Community College
Organization’s mandate: We provide education and support to families who have MEN. There are three different kinds of MEN and three different blocks of education that we do. We go around the country and give MEN seminars at major medical centers that have physicians and departments familiar with MEN and that have qualified physicians who can take care of people with this disease.
Organization’s strategy: MEN is a rare disease, affecting one in 25,000 people. We reach out not only to those who have the disease, but to their loved ones, caregivers, and to physicians and medical personnel who may not be familiar with MEN. We provide them education and contact with MEN patients and families. One goal is to reduce the years and years of testing people with MEN have to go through to get a diagnosis because many physicians aren’t familiar with the disease and its symptoms. We also invite nurses and interns to come to our educational seminars and learn what MEN is.
Funding strategy: The primary source of funding is from the Hageman Family Foundation. We also try to get grants to help with some of our work and seminars.
What’s changing at your organization in the next year: We have a stellar medical advisory board and we’ve asked these physicians to speak on various topics that our Facebook community identify as important topics. We have a videographer, and we will post these videos on our webpage and Facebook. We are also doing a second printing of our introduction to MEN booklet as we are almost out of our initial run of 3,000 books.
Management philosophy: I surround myself with the best of the best. I don’t take a salary, but keep a small team to help run the organization, keep us compliant with our 501c3 and make sure we get as much work done as possible to help the most people. My style is definitely a team approach.
Guiding principles for running an effective organization: Running an effective organization takes a delicate balance of working in the weeds and in the treetops. We have daily minutia that must be done and patient concerns about MEN treatment, research, and care. But we must also look to future plans from the treetops so that we can continue to serve the MEN community. The second guiding principle is to not let the haters get you down. It doesn’t matter how good your intentions and how hard you work, there will always be naysayers. Ignore them.
Best way to keep your organization relevant: Listen, listen, listen. Our patient community and doctors are on the frontlines in dealing with, treating and living with MEN. Our patient community wants to be well-informed. To stay relevant, we have to listen to them about topics, platforms for relaying information and what they need from us. If our mission is service, which it is, we need to listen so that we know what our community needs.
Why people like working for you: They know where my heart is. I am committed to doing the very best I can do for the MEN community, which includes those who have the disease, those who love them and those who treat the disease. I have had 24 surgeries in 15 years, and I live without a pancreas. When people hear about that, they know I have walked in their shoes. I hope they see my passion for helping.
Mentor: My mentor is Joy Bishop. Joy is a leader in our community in Tennessee. She is intelligent and only takes on projects that she can give her full commitment to. She’s a real go-getter. You just can’t tell her “No.” She’s an amazing, amazing woman, even when battling adversity in her own life. I’ve done several projects with her, and she is led first by her passion and belief in what she is doing.
On the Job
What inspires you: What inspires me is the desire to help MEN families. If you have MEN in your family, there’s a 50-50 chance of your children having this disease. It can be very deadly. It can take 10 to 15 years for people to get diagnosed. We feel we’re decreasing the time from initial symptoms to diagnosis down with our educational efforts and with efforts to get people to facilities familiar with MEN. That gives me the biggest joy: helping people get to the doctors in medical centers who are familiar with MEN and can diagnosis more quickly.
What makes you hopeful: The research that’s being done in this disease. Our vice president is a physician who also has this disease, so we’re right on top of research for everything that happens. I spend my days reading medical articles and interpreting them. It used to be that people weren’t tested for this disease until they were in their 40s. Now, if you have MEN in your family, the children get tested by age 5. I’ve seen the field explode with new research. Stopping MEN will take cutting-edge genetic interventions, but those just may be out there in the future.
Best organization decision: Balance the heart and the business end of running a nonprofit.
Hardest lesson learned: I was not a social media person when we started this. I think the hardest lesson learned is balancing a public platform – although ours is a closed group – with protecting people’s privacy, especially when they are too free to share information!
Toughest organization decision: When you have employees who don’t work out, it’s always hard to let them go. That is the toughest thing for me.
Biggest missed opportunity: Not writing a book sooner. We were focused on the website and the Facebook page. In 2017 I wrote a book Multiple Endocrine Neoplasia with help from a Global Genes’ grant. The book is for physicians to give to newly-diagnosed MEN patients and their families and for other MEN individuals who want basic, helpful information about MEN. We send out three to everyone who asks for them—one for themselves, one for the doctor, and one for a family member since this runs in families.
Like best about the job: Interacting with people and knowing I really do help people.
Like least about the job: Dealing with difficult people whose only goal is disruption.
Pet peeve: Patients putting medical records on Facebook.
First choice for a new career: I would be a physician and endocrine surgeon
Most influential book: The Bible
Favorite movie: Gone with the Wind
Favorite music: ‘80s Rock and Roll
Favorite food: Seafood
Guilty pleasure: Melted white chocolate and potato chips together.
Favorite way to spend free time: I do a lot of gardening. I have eight separate gardens that I work in. There’s nothing like going outdoors and working in your garden to calm yourself down and regain your focus.
August 23, 2018
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