Who We Are

Our Mission

At Adrenal Insufficiency United, we work to improve the lives of those affected by adrenal insufficiency through support, education, collaboration, and legislative action.

How and why we started

Before social media, we were virtually alone. While we struggled to understand this disease, we watched our loved ones suffer. Plagued by nightmares about what would happen if we weren’t there to give our loved ones the injection to save their lives, many of us felt anger, depression, hopelessness, and frustration. We could not accept that this was the best care possible. We knew there had to be something better. In our own ways we fought, but we fought alone.

Then along came the internet and social media. We started to find each other and see that we WE WERE NOT ALONE! We realized that we must unite as one voice to effectively create change. We banded together, a grassroots group of patients and loved ones, selling cupcakes, and knocking on government doors, and Adrenal Insufficiency United was born.

How we’ve grown

Since our beginning, AIU has grown from a small passionate group, into a large network of people working together. We provide patient support through our support groups and website information. We create educational materials for schools, physicians, and emergency teams, and we collaborate with other organizations to promote awareness and improve patient care. Our work on protocols and legislation takes place on both state and national levels.

Vision for the future

Every person affected by adrenal insufficiency deserves a chance to reach their full potential. Our vision for the future includes clear information for physicians on diagnosis and testing, to avoid needless suffering. The development of an instant cortisol meter, so patients and caregivers can easily adjust treatment, and standard emergency protocols, so they can feel confident seeking help. We believe in this vision, and we hope you’ll join us to make it happen.

Our governing body is, and will always be, comprised of those affected by adrenal insufficiency. We pledge to never lose sight of why this group was started.

AIU Members and Volunteers

As a non-profit 501(c)(3) we rely on our members and volunteers to help achieve our mission a keep the needs of our community our top priority. Our newly formed affiliate groups will give members a voice to help guide our board as we develop our goals, policies and procedures. Affiliate groups include:

Parents of Children with Adrenal Insufficiency
Adults with Adrenal Insufficiency
Spouse/Partners and Caregivers of adults with Adrenal Insufficiency
Teens and Young adults with Adrenal Insufficiency (starting May of 2019)

Affiliate groups with 50+ active members are able to nominate a representative to the AIU Board of Directors. When a group has less than 50 active members the AIU Board of Directors may, if they choose add a board member to represent that group. Join as a member now and start adding your voice to our conversations!

Executive Director

Jennifer Knapp is one of our founders. Her daughter has adrenal insufficiency. Jennifer is a former business owner and special education teacher with a passion for helping others, and a commitment to creating positive change for those with AI. Together with Kirsten Norgaard, she worked to pass AI protocols in Oregon. In addition to her role as AIU Executive Director, Jennifer also serves as the Oregon state Ambassador for the National Organization for Rare Disease, (NORD)

Board of Directors

Kirsten Norgaard is also a founder of AIU. She has a son with adrenal insufficiency. She is tenacious and unrelenting in her fight to create protocols, not only for her son, but for all with adrenal insufficiency. Kirsten was able to get protocols enacted in her county and at her local hospital providing a model for others who wish to do the same.

Paula Kirby Rivas is mother to a child with adrenal insufficiency. She has helped pass legislation to improve the care of those with adrenal insufficiency.

Randy Fishburn is a Colorado native. He began his adult life as a paramedic. He now has over twenty years experience in the information technology field and works as a virtualization engineer. Randy has Addison’s disease and pan-hypopituitarism, (probably from birth) He’s passionate about helping others with AI and rare diseases. His experience in emergency medicine and I.T. led him to modify an insulin pump for cortisol delivery when tablet therapy didn’t work. His innovative attitude and previous experience working with non-profits makes him a welcome addition to the team.

Blake Heflin was diagnosed with classical non-salt wasting CAH at age 4. He graduated from Christopher Newport University with an Honors: B.S in Cellular, Molecular, and Physiological Biology and is currently attending George Mason for a Master’s in Health Administration and Health Systems Management. Blake is a Manager for Scribe America in the greater DC area, and has a passion for good medicine, great people, and his two leopard geckos: Stumpy and Mason.

Shannon Taylor received her Bachelor of Arts from Christopher Newport University, where she majored in Communication Studies and minored in French. In August 2018, she will begin a Master of Arts in Communication program at George Mason University, focusing her discipline in Health Communication. She has worked as a research assistant in family and intercultural communication, and aspires to have a career in healthcare (specifically in patient advocacy, family health education, or public health) upon graduating from GMU. Shannon is the partner of someone with AI.

: Jennifer

: Kirsten

: Kirby

: Randy

: Blake

: Shannon

The Stewardship Council elects board members and helps keep AIU’s mission the priority.

Stephanie Ash, Sandy Alprin, Jill Lester Crowley, Jennifer Knapp

AIU welcomes volunteers and provides all the resources and help you need to help make a difference in your communities. Contact jennifer.k@aiunited.org to find out about volunteer opportunities.