RARE Daily

Lauren Dunlap, Co-Founder and Executive Director, AAIDA

April 15, 2021

Name:  Lauren Dunlap

Title: Co-Founder and Executive Director

Organization:  Advocacy & Awareness for Immune Disorders Association (AAIDA)

Social Media Links:

Disease focus: Since AAIDA is not a disease-specific organization, this opens up a lot of avenues for us to touch an array of rare immune diseases. AAIDA’s focus is on immune dysregulation as a whole (primary Immunodeficiency, secondary immunodeficiency and autoimmune diseases). We focus our education and advocacy efforts on the rare disease immune sector including: Behcet’s disease, primary immunodeficiency, Sjogren’s syndrome, PANDAS, CIDP, ITP, Kawasaki Disease, MCAS, and many more.

Headquarters: Charlotte, North Carolina

How did you become involved in rare disease: I was diagnosed with primary immunodeficiency, in February 2010. Since the time I was diagnosed, I have made it a priority and my duty to educate others and be an advocate for patients who may not necessarily be able to advocate for themselves along their own rare disease journey. Several of my goals in helping complex, rare disease patients, include reducing the delay from onset of symptoms to diagnoses to treatment, and educating and empowering patients to maneuver around complex insurance issues including coverage of life-saving treatments. It wasn’t until the middle of 2016 that I took this philosophy a step further and started down the path to open a nonprofit, which I co-founded, and we opened AAIDA in February 2017.

Previous career: I’ve had so many different careers in my life mostly due to my curiosity about the world and the people in it. My eagerness to always learn something new is what took me down various career paths. I worked for the North Carolina public school system for five years, was a manager for Starbucks for three years and spent many, many years working in the restaurant industry which I grew up in, prior to entering the nonprofit world.  

Education: Bachelor of Arts degree from Belmont Abbey College. Prior Authorization Certified Specialist (PACS), National Board of Prior Authorization Specialists

The Organization
Organization’s mandate:  AAIDA exists to create awareness, advocate, and conduct research to help the greater than 25 million Americans living with immune disorders. AAIDA works to promote research and create better awareness of immune disorders. AAIDA’s vision is to propel research that will ultimately lead to cures for immune disorders.

Funding strategy: We have been an all-volunteer nonprofit for the last four years until just recently, in January 2021, when we contracted out a part time communications director position. We hope to grow our staff in the coming years by 3-5 full time employees. This is part of our strategic plan for the next 3 years as well. All of the funds we have raised have been based on grassroots campaigns geared towards educational fundraising events involving donors and sponsors. We are now working to excel our educational and fundraising initiatives through outreach with community partners, sponsors, and donors who have similar goals in line with AAIDA. Some upcoming initiatives we are planning include two “virtual plasma drives” in 2021 to help combat the current shortage of plasma-based medications for rare disease patients.

What’s changing at your organization in the next year:  We have several exciting changes occurring for 2021. The first is a new medical advisor that is joining our team this month. This immunologist will be spearheading several areas that have been lacking, including research, and building a new team for the medical advisory board as well. We have also aggressively implemented monthly educational webinars in lieu of our annual fundraiser being canceled because of the pandemic. These national webinars are recorded live and used as a resource for patients on our website. What’s interesting about AAIDA’s webinars is that they hit various areas and encompass  the diversity in patient communities.

Management philosophy: I embrace input from multiple sources including board members, medical advisors, patients, industry, and nonprofit partners, to make better informed decisions based on various backgrounds and a diversity of inputs. I encourage others to do the same, as this philosophy will help them to grow in both their personal and professional life.

Guiding principles for running an effective organization: Open mindedness and the Golden Rule of “treating others as you want to be treated” are two key aspects I try to live my life by as well as with running AAIDA. These two simple, yet often neglected, concepts will help any organization grow, as well as any person to grow. A person’s entire life is almost totally dependent on relationships—good or bad, physical or spiritual, new or established. It is all about relationships.

Being flexible is also key to running an organization effectively. We’re all aware everything does not go as planned in the game of life. Having the ability and skillset to pivot in situations we aren’t expecting is vital.

Best way to keep your organization relevant: I try to stay abreast (and keep my board of directors abreast) on the latest research and medical breakthroughs regarding various conditions as well as federal and state policy changes that affect patients pertaining to insurance and treatment options. We always want to be considered as a resource for patients and providers to turn to so keeping up to date and relevant on the latest trends in those fields is important. 

Why people like working with you:  I have been told over the years that what motivates people around me is they see my passion and drive to accomplish and take on even the most monumental of tasks. If someone says “it‘s impossible” or “you cannot do that,” you best believe that task or situation will be moved to the top of my list to tackle and take on.

Mentor: I have two people I think of as mentors when it comes to AAIDA: Tonya Winders, CEO of Allergy & Asthma Network, and Mirta Santos, CEO of the American Behcet’s Disorder Association. These two women have taught and guided me so much through the years, I couldn’t be more thankful to have such a support system surrounding me in the nonprofit sector as well as my personal life.

On the Job
What inspires you: I think some of the most inspirational moments of my life have been when I meet other rare disease patients and connect with them. It puts things into perspective when I step back and evaluate someone else’s situation and what they’re going through or have on their own plate. These interactions have often left me feeling more humble and also more thankful in my rare disease journey.

What makes you hopeful: As a patient, what makes me hopeful is the possibility for a cure for not only my own rare disease(s), but other ones as well. This is also true in regard to treatment options for other conditions. As an advocate, what makes me hopeful is connecting with and meeting other patients that I help, as well as the healthcare providers who treat them.

Best organization decision: Founding AAIDA in 2017 and recruiting volunteers and board members who are just as passionate about the organization as I am and who want to make a difference in their communities.

Toughest organization decision: This past year was difficult for everyone but some of the toughest decisions we had to make revolved not only around canceling events, but also around having to change our structure and how we ran things. This included changes to our organizational structure and hierarchy when specific volunteers had to step away for personal reasons and illness.

Biggest missed opportunity:  2020 (enough said)

Like best about the job: I enjoy interacting with and meeting people on a daily basis. The fulfillment I get in helping patients is why I get up in the morning. My drive is all about the patients and being their advocate to assist them in their own rare disease journey.

Like least about the job: There are many things I have to censor and hold back when it comes to interacting with patients, industry, and providers. Many times, I have to make sure what I say is not taken out of context. It’s also frustrating when I know the answer to a question a patient may ask me but cannot necessarily answer it so as to not undermine their treating physician with my input.  

Pet peeve: Loud chewers

First choice for a new career: None. I love what I do in the nonprofit world.

Personal Taste
Most influential book: The Last Lecture by Randy Pausch

Favorite movie: Gone with the Wind

Favorite music
: If I had to pick a genre or decade of music (I like almost anything) I would probably pick the 80’s.

Favorite food: Mexican

Guilty pleasure: Cookies

Favorite way to spend free time: For those that know me best, they know I’m usually off in the wilderness somewhere, exploring–in the desert, mountains, forest or any other terrain and territory you can imagine. If I’m not doing that then I am probably on my farm in South Carolina, hanging out with the cows and my donkey, Ellie Mae.


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