Support for Those Living with Adrenal Insufficiency

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.
Kerri Engebrecht has an 18 year old son with Addison’s Disease. Since his diagnosis she has hit the ground running in advocating for what is best for him and others with this and other rare diseases. She has worked to get state protocols in place, facilitated support groups for other parents going through similar situations and most recently I has been working with the White House on getting Covid-19 Vaccines distributed to our most vulnerable people first, namely those with chronic and rare diseases, that put them at higher risk from this illness. Kerri is very involved with Children’s Wisconsin, volunteering on numerous committees and is also co-ambassador for RAN, part of NORD, for the state of Wisconsin. Kerri has a passion for helping people realize the need for and obtain mental health services for those with rare diseases and helping all those with rare disease to live life to their fullest potential.
Michael Shapiro-Barr became acquainted to AIU and the adrenal insufficient community while working at Backpack Health. Michael attended AIU’s patient conferences and we are happy he’s joined our board to help bring a new perspective to our board.

 

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

Ann Rumrill, Kerensa Stewart, Constance Leon, 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.

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