RARE Daily

Rare Leader: Jennifer Knapp, Executive Director, Adrenal Insu

August 20, 2020

The Basics
Name: Jennifer Knapp

Title: Executive director

Organization: Adrenal Insufficiency United

Social Media Links:

Disease focus
: Adrenal insufficiency (AI) occurs when the body is unable to properly regulate cortisol, a hormone that helps maintain essential functions such as blood pressure, blood sugar, and heart muscle tone. There are more than sixty causes of AI, including genetic mutations, autoimmune disease, infections, and steroid treatment for other conditions such as asthma and cancer. Adrenal insufficiency is not a lack of adrenaline, but a lack of cortisol, a hormone essential to life. Glucocorticoids (steroids) are the medications required to treat adrenal insufficiency.

Headquarters: Oregon City, Oregon

How did you become involved in rare disease: My daughter was born with adrenal insufficiency in 1995; she’s 24 now. That’s when I was first personally touched by rare disease. The first time I reached out to try to find other people, she was 15 and going through some struggles. I reached out in a chat room and a woman named Erica introduced me to other parents on Facebook. That’s how Kirsten Norgaard and I eventually met, we’re both from Oregon and we started working together.  Soon after we started AIU. We’ve had many parents, family members, and affected adults help grow AIU to what it is now and we wouldn’t be here without them.

Previous career: Taught special education and was an elementary education reading specialist

Education: B.A. in early intervention and special education from Augustana College, M.S. in early intervention and special education from the University of Oregon

The Organization
Organization’s mandate: Improve the lives of people with adrenal insufficiency through support and education. Having a rare disease—a lot of your symptoms and the way you feel—you often get told they’re not due to adrenal insufficiency. Yet when we share our stories we find out we all have the same symptoms. 

Funding strategy: We’ve done a few fundraisers. A lot of the fundraising is in the form of donations. We get between $20 and $200 from members. Many of our members use the Facebook fundraising platform from our page often as birthday fundraisers. We also have a donate button that people can attach to shared posts. We get a lot of revenue that way—more than I thought. We have an online store where we sell awareness and some medical identification products that generate some funds for overhead. Lastly, we have a few annual donors that together give about $12,000 a year. Sponsors have helped with our conferences and most recently, grants from Global Genes and Adrenas helped us with our COVID Emergency Fund.

What’s changing at your organization in the next year: Mostly due to COVID, we’re going to be putting a lot more focus on video support groups (small groups of six to 10 people) and local meetings. We’ll be working to find and organize more volunteers so that we can accomplish that.

Management Style
Management philosophy I like to find volunteers, in fact we’re all volunteers. If I find a volunteer that’s passionate about something, or has an idea or project that they want to work on, I just let them go with it and lead that. As long as they’re following our guidelines I want to give them the freedom to work independently with frequent and open communication.

Guiding principles for running an effective organization: We’ve existed through our sheer will and stubbornness to make this work. That’s only sustainable for so long. I have times when I feel really burnt out, so I’m trying to focus on how we can make sure that we’re viable over time and the future. 

Best way to keep your organization relevant: We have many Facebook groups. We are checking in with our members daily hearing what their needs are and what their concerns are. Everyone on our board is affected by adrenal insufficiency, either as a parent, as a spouse, or as someone with the condition. We live the same life as our members day-to-day. That keeps us relevant to our members.

Why people like working with you: I trust them to follow through on their tasks and they know that they can come to me when they need help. They feel safe to offer constructive criticism if they see something within the organization or something that I need to do differently.

Mentor: My mentor, collectively, are other directors from rare disease groups. I learn a lot from reading what they’ve done and asking for their advice if they’re experiencing a similar issue. I love being able to go into the group and just say, has anybody else had this happen? 

On the Job
What inspires you: Stories of people who have overcome circumstances in their lives, or experienced self-doubt and are not sure if they can affect change, but they do it anyway. It seems like those people are the ones that get the most done and end up affecting and changing things the most.

What makes you hopeful: I link this to COVID. It’s this ongoing tragedy with repercussions that are going to last a long time. On the other hand, it’s creating an awareness and an understanding of people who live with chronic conditions. The stay at home orders, mask wearing, the inability to work, worrying about getting sick because of the actions of other people… it’s how the rare disease community has lived for years. I’m hoping that if anything good comes of this, it will be that people understand those with chronic conditions and/or rare diseases more and be more empathetic. And that in turn will lead towards changes in policies.

Best organization decision: The best thing we did was deciding to have our first patient conference in 2018. It was a leap of faith that we would be able to get speakers, that people would come, and that we’d be able to pay for it. It turned out to be amazing. It seemed to cement us as a legitimate organization. It opened the door to more collaboration with other groups, researchers, and industry because we did that conference. It gave us some validity other than just being a Facebook group.

Hardest lesson learned: How important it is to confront problems and misunderstandings within the board and within your community immediately. Even if you’re worried it might hurt someone’s feelings, or reflect on you poorly, you have to face those things head on and deal with them.

Toughest organization decision: When decisions are hard, and you consult with people that have expertise or have gone through those issues before it helps you make that decision. Then you can look back and know you made the right choice.

Biggest missed opportunity: For me, it’s more an issue of learning how to find and take advantage of opportunities that you may not have thought of. For instance, we were at a NORD conference and I looked for any company that might be at all able to help our members, even if it was a reach and I wasn’t sure what they were about. I reached out to them anyway and made connections. Some of those have become beneficial to us and they were people I wouldn’t have even thought of approaching before.

Like best about the job: Feeling like I can make a difference in someone’s life for the better.

Like least about the job: I feel like I’m working 24-7 and that there’s something more to do. I feel that burnout that a lot of us start to feel but that burnout gets fixed as soon as somebody comes into the group and says, “Oh my gosh, you helped me so much.” And then I’m like, “Okay, I can do this.”

Pet peeve: The terminology around adrenal insufficiency is not standardized from group to group or doctor to doctor and it causes a ton of confusion in our community.

First choice for a new career: My husband and I live in an RV. I would love to be a campground host because then all our expenses would be paid for. I’d like a temperate climate near the woods and next to a river where all the campers are perfect and respect the rules.

Personal Taste
Most influential book: I love to read. It’s hard to pick one. There are different books for different times in my life. When I was a kid, I really loved the Chronicles of Narnia by C.S. Lewis. In high school, Lord of the Rings by J.R.R. Tolkien and War and Peace by Leo Tolstoy. As an adult, I like memoirs of people who faced a lot of adversity, like Angela’s Ashes by Frank McCourt and Wild Swans: Three Daughters of China by Jung Chang. 

Favorite movie: Star Wars

Favorite music
: Folk rock

Favorite food: Pizza

Guilty pleasure: Fresh pastries and desserts from local bakeries

Favorite way to spend free time: Hiking with my husband and dog or sitting outside the RV and relaxing.


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