Rare Leader: Karen Durrant, President, Autoinflammatory Alliance
October 29, 2020
Name: Karen Durrant RN, BSN
Title: President/Founder of the Autoinflammatory Alliance
Organization: Autoinflammatory Alliance
Social Media Links:
Disease focus: Autoinflammatory Diseases includes CAPS, TRAPS, FMF, HIDS/MKD, and more. There are many autoinflammatory diseases with symptoms that are present from childhood or infancy. Some refer to these diseases as periodic fever syndromes. A few develop symptoms in adulthood, or late childhood. Most autoinflammatory diseases are caused by genetic mutations.
Headquarters: San Francisco
How did you become involved in rare disease: I have dealt with a lot of rare disease patients in my career as a pediatric registered nurse. Then I had a child who lived for a few years undiagnosed with systemic inflammation before he was diagnosed with a rare autoinflammatory disease. Through this, I saw a need to help others on this path, so I decided to start our nonprofit with other parents and patients with autoinflammatory diseases that I had connected with online or in person.
Previous career: I still work as a pediatric RN part-time and run the Autoinflammatory Alliance voluntarily many hours a week and will always, and proudly am a mom.
Education: B.S. in nursing from Brigham Young University. I took classes after graduation at the University of Utah to pursue other interests, including American sign language, art, rock climbing, and wilderness survival.
Organization’s mandate: The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. Early diagnosis and the proper treatment can improve lives for patients with autoinflammatory diseases.
Organization’s strategy: We listen to our patients and medical professionals globally, and seek ways to address unmet needs, and foster collaborations for research and improved care for patients. Our private patient groups allow us to have real-time, personal contact with thousands of patients and caregivers, and we prioritize helping patients to have better access to experts, genetics, and beneficial treatments. We want doctors to be aware of these diseases and consider checking for these conditions when presented with certain symptoms. We “meet patients where they are” online in patients groups, through our saidsupport.org blog, website and also with medical professionals seeking concise, open-access information, such as our comparative chart of autoinflammatory diseases that we turned into a leading global database at Autoinflammatory-search.org. These are generally newer diseases. The term “autoinflammatory” was classified in 1999. Many doctors are not aware of these rare conditions, so we have a lot of work to do, starting with getting patients diagnosed and onto beneficial treatments. It is a big effort. Getting doctors to help each other, and train others so we can improve care and treatment all over is needed, since there are very few dedicated clinics for these diseases right now.
Funding strategy: We are mostly supported by donations and fundraising events, largely initiated by our patient community, and we raise a lot of funds through online fundraising, especially on Giving Tuesday and matching gift fundraising. In addition, we seek grants for specific projects. We did get some federal funding for the first time in 2019 from the National Institutes of Health for the second NIH-WRNMMC Symposium for Autoinflammatory and Immunedysregulatory Diseases. We co-sponsored, managed, and were the main funder of the symposium, along with the NIH NHGRI, NIAID and NIAMS, with additional support from the SJIA Foundation and the FPID.
What’s changing at your organization in the next year: We are working on updating and improving our websites, and will be expanding the autoinflammatory-search.org database with more diseases, additions for current diseases, plus versions of the database in multiple languages, and other expanded features. We are also adding a dedicated medical editorial board for the database. We have had a voluntary medical advisory committee for the database, educational materials, and for other projects, but we are working on some internal restructuring of our scientific advisory board, organization structure, bylaws and such to be more up to date and efficient. In addition, we will be expanding our efforts for International Autoinflammatory Awareness Month (autoinflammatorymonth.org) in August to have a global coalition of organizations helping to plan more initiatives for 2021.
We are helping to bring doctors together in the Americas and globally for autoinflammatory diseases. Research collaborations are a big factor in this, such as the development of the Trans-American Autoinflammatory Diseases Research Network (TARN) with experts, and a consensus working group disease guidelines project to develop “points to consider” for diagnosis, care, and treatment guidelines for a number of autoinflammatory diseases with a global coalition of experts that will be published in the spring of 2021. This is an exciting project to address global needs, with goals to train other doctors, improve genetic testing and develop a network of clinics and experts that will collaborate to improve the care and treatment of patients, especially in areas of the world with less access to genetics and treatments.
Management philosophy: We follow a form of transformational leadership, with a lot of flexibility and autonomy for leadership roles. Flexibility, patience, and being able to change the direction as needed when the unexpected arises are essential, and we put the needs of the patients first, especially during challenging times. We collaborate with others to help make an impact. I have a past background as a pediatric ER/trauma and triage RN, so I tend to go into “triage mode” in a crisis, but I do not have typical nonprofit management training. I am learning as I go and have a lot of improvement to make in management. I have learned that having a good way to channel your compassion into action is essential, and being involved in the greater rare disease community has helped greatly for inspiration and guidance on how to do better.
Guiding principles for running an effective organization: Compassion, honesty, kindness, the ability to see the hidden potential in others, and treating people as you would hope to be treated are essential. It is important to gather in all stakeholders (patients, medical professionals, and pharma) who want to help work on common goals to the table, which we are doing. Building collaborations and communicating with everyone is important, and getting involved in research societies, with doctors, and other patient organizations, has been a great way to come together. We do need to be better at tooting our horn about our impact, but most importantly, we want to do things that improve lives, reduce the undiagnosed and untreated phase, and make a difference. The rare disease space is tough, lonely, challenging, and many patients have been let down a lot. They can feel as if they are at the end of the road before they get to our organization. We try to help them to have more hope, and direct them to specialists, genetic testing and other resources that can lead to improved diagnosis, care and treatment.
Best way to keep your organization relevant: Addressing unmet needs and obstacles to diagnosis in the rare disease space drives a lot of our educational materials and online resources. I have asked myself, as a rare disease parent and as a medical professional what I wish existed when we were in the undiagnosed phase, and that has driven the creation of the chart/database on autoinflammatory-search.org, and other resources like the blog and printed materials. People do notice our genuine, quality efforts. But in the rare disease world, awareness outside our disease community is very important. Finding a way to engage the community, especially for fundraising for big goals is a constant effort. This means being actively present online and on social media. We need to update all our sites to fit the current visual and user experience expectations. All this takes a lot of time, and we put patients first, so sometimes these things take longer to get done, but it is very important. Improving communications and have better guides for volunteers for fundraising, advocacy, and events will make it easier for others to get involved, and will ultimately make things easier for organization management.
Why people like working with you: I am a hard worker and will not give up. I am very dedicated to this cause and keep patients’ needs at heart. I can also work within a tight budget, putting funds to the most use. I am a rare mom and have my own medical challenges (not autoinflammatory), but I am also a medical professional with a research background, and so I can speak from all sides. Mostly I’m driven as a mom and a nurse who wants to help others at the deepest level.
Mentor: I did not have a mentor per se, but followed guides on starting a nonprofit for rare diseases on the Genetic Alliance website, NORD, and other resources (the Global Genes Project came along after we had started our nonprofit, but they have some really great toolkits I refer to now.) I also looked online for other inspirational rare disease orgs, and found some really helpful NOLO guidebooks.
On the Job
What inspires you: The patient community, my family, and the tireless dedication of our board members, scientific advisors, and all the researchers and doctors that volunteer their time for the cause. And all the patients that endured these diseases too long without the right diagnosis or treatment, or who have died due to these diseases. They are never forgotten, and their memory has kept me motivated to get certain things done, even during the most challenging times in my own life.
What makes you hopeful: These diseases are rare, generally lifelong, and some can be progressive and damaging, if untreated. But for most of these diseases, there are treatments available right now that are beneficial, and a few autoinflammatory diseases that have more targeted treatment. Many other rare diseases do not have any beneficial treatments to change the path of the disease. Things are more hopeful for patients with autoinflammatory diseases, as you can greatly improve the quality of life for patients if you can get them diagnosed, and onto the targeted treatments early in life. There is a lot of hope to change, and even save, patient’s lives with more awareness and access to the right care and treatment.
Best organization decision: Switching our name to the Autoinflammatory Alliance in 2014 was our best decision. It was the name I had wanted from the start, but in 2006, when we were starting our nonprofit, some doctors really wanted to feature NOMID –the most severe form of CAPS, and the most deadly known autoinflammatory disease at that time to show that these diseases were serious, so we named our organization The NOMID Alliance. But new and equally or more severe and complicated autoinflammatory diseases were discovered, and the name was confusing, so we went through the process of a name change to the name that I had originally wanted. We have always helped patients with all these diseases, and our current name better reflects that.
Hardest lesson learned: Rare disease fundraising is especially difficult for diseases that no one has heard of. But it is especially hard to be an nonprofit dedicated to a rapidly increasing spectrum and collection of autoinflammatory diseases, versus being able to dedicate all your efforts to just one rare disease. When we started, there were very few known autoinflammatory diseases, and now there are more than 50, and the list is growing rapidly.
Toughest organization decision: I think that the most difficult challenge is learning the hard way that you need to fully vet outside contractors, and even other organizations for some collaborative projects. There are people that try to prey upon nonprofits, and promise more than they will actually deliver, or are not what they say they are. Sometimes you have to fight hard to get what was agreed to in a contract, which can take unexpected amounts of time and energy.
Biggest missed opportunity: Not being chosen for the Chan-Zuckerberg Rare As One Initiative was our biggest missed opportunity. The funding that came with that would have helped immensely in our efforts for all autoinflammatory diseases, and it would have boosted the genomics and registry efforts with the Trans-American Autoinflammatory Diseases Research Network (TARN) that we along with experts from the NIH have been helping to form all over North and South America, island territories, and also India and other parts of Asia. TARN is being developed, but more early funding and advisory support would have helped it to get farther faster. But we are thrilled that three nonprofits dedicated to specific autoinflammatory diseases did earn this prestigious grant, and it is making a difference for those diseases, and we are learning from their experiences, and know this will help all rare diseases.
Like best about the job: The patients and their families are some of the most incredible and inspiring people, and I cannot imagine my life without them, even though the path that brought me to them was due to my own child having one of these serious diseases. I have met and have collaborated with the most dedicated, caring humans and patient advocates through our patient community and the rare disease community at large, and I am able to have a very personal impact on so many patients.
Like least about the job: Unlike my RN job, I cannot clock out after a shift and be done, as this is a 24/7 organization. So it is a tough balance, especially when my own medical needs, or those of my family or other needs arise. I try not to focus on my challenges, but life has hit hard some years, especially in 2020. I have not been able to get as far on many things, but it is all worth it.
Pet peeve: We are a nonprofit with a global reach, making a big impact, but many think we have a big office, staff and resources. We are volunteer run, on a shoestring budget, working from a home-based office to conserve the most funds to help patients and support research. People do not notice our Pacific time zone, so I get some calls at very awkward times, since I usually forget to turn off the phone. Whenever I get a call between 3 a.m. and 5 a.m. I always awaken fearing a loved one is calling from a hospital or something worse. This year, virtual global research meetings often start at 3 a.m. to 5 a.m. in my time zone.
First choice for a new career: I wish I had time to learn to code so I could develop more digital projects from scratch, versus having to deal with programmers, and I could do that job from anywhere.
Most influential book: I tend to read young adult fiction to keep up with my kids, and medical journals, especially in 2020 for my efforts with rheum-covid.org. But the recently published Textbook of Autoinflammation by leading experts is a dream realized. Until recently, these diseases were hardly, if ever discussed in medical school, or specialty training for doctors. This is a big deal.
Favorite movie: Awakenings has had a big impact on me for decades as an RN, and later as a parent of a child with a rare disease with neurologic complications.
Favorite music: I love 80’s alternative, synthpop, ska, and a lot of music from Polynesia and Africa, with drumming and acapella vocals. But my most favorite music is hearing my boys singing in anything from the San Francisco Boys Chorus in person, or on past albums and recordings, after they have grown up.
Favorite food: Good bread-especially sourdough, and all kinds of food from Europe, Asia, and Polynesia.
Guilty pleasure: Chilling out at home in my pajamas.
Favorite way to spend free time: Travel, adventure, crafts, hand and machine sewing, doing things with my family, gardening, service projects, celebrating holidays and cooking. But generally, I am trying to organize, tidy, and catch up on many unfinished projects, especially family photo albums.
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