After a Season Away....Advocate Like a Rare Mother....

I had been really consistent at being here and at writing out my life as an advocate for two young adult children with rare, chronic illnesses. But in this season of life, a lot has changed. Mostly my are boys getting older and I am not wanting to share the details of their lives on the internet in the same ways that I did when they were younger. Trust me when I say I will always advocate like the rare mother that I am, but the tone here may change a bit because in life we change, we evolve, and if we don't we are not really living....

In this past year I have had to learn some new ways to advocate. I took over as director of one of the nonprofit umbrella groups for Addison's Disease - Adrenal Insufficiency United. Stepping into this role, I am blessed to have the two founders who have tremendous vision and passion for our mission on our board. This year has been a lot of me learning how to run the day to day operations of a nonprofit organization. We started by going back to the basics. We went and revisited the mission statement of our organization to be sure that it still reflected the mission that we feel we are working towards as a group.

Adrenal Insufficiency United (AIU) is dedicated to supporting individuals and caregivers affected by adrenal insufficiency; empowering them with education, resources, community building, and legislative advocacy.

Our board then got to work establishing how we would reach each part of the mission statement. One thing we all agreed on is that AIU is known in our little corner of the rare disease world for our conferences. We decided that they would continue to be the cornerstone of how we move forward. And we came up with a plan to do so. In odd years beginning in 2025 we will have one-day events in cities where we have members who can help us locate a site to host the event. In even years we will have our big three day conferences bringing in people from around the country to meet with each other and hear from professionals in all areas of adrenal insufficiency. We are very excited to have plans in place for Portland, OR (March 25,2025), Los Angeles (April 2025) and Phoenix (November, 2025). Minneapolis, MN will be the site of our large conference April 23-25, 2026. Details for all of these are in the works and information on details and registration will be available on https://aiunited.org

We currently provide support primarily through FaceBook forums, with a total of over 15,000 people from around the world participating in those. We have one large one which is mostly adults with adrenal insufficiency of any kind. There is a group for parents and caregivers of children with adrenal insufficiency because we know there can be unique questions and needs in this group. The group for spouses, family and friends is one that does not have affected people in it and people there can feel safe to ask questions they may not want to ask with those affected in the same forum. I also want to note that in our large forum - if a caregiver, partner or family member for an adult wishes to join and their affected loved one is in the group we request that the affected love one ok that person joining so that group remains a safe place for affected people to ask/say whatever they want. We also have a bereavement group, a group for those helping with our conferences and others for the people who help us run this organization smoothly.

When it comes to education and resources we often find that people join our forums and it is the first time they are getting real life information of how to live with adrenal insufficiency. There are endocrinologists who do understand the complexities and nuances of this condition, but they are few and far betweem. As far as primary doctors, emergency room doctors and doctors in other areas of care - adrenal insufficiency is typically something that was mentioned in training, but not much focus was on it. At AIU this year we have doubled our Medical Advisory Board. Our hope is that this board will be able to help us to develop resources that are accurate and medically sound for our members. We also know that each of these doctors comes to adrenal insufficiency with a unique focus within the condition and as a team they will be great resources for us, as we try our best to provide answers to some of the most important questions our members have. While we can never give medical advice as a nonprofit, we can provide medically accurate resource to help our members make their own educated decisions.

While I have not touched on our legislative advocacy efforts, I will do that in my next one. I want those who are part of AIU to know the dedication that I, as director, and the entire board have to everything that I have laid out here. We are committed to making the lives of those with adrenal insufficiency better and longer. We also want the caregivers of those with adrenal insufficiency to always have the information and support that they need.

Have any questions on adrenal insufficiency? On Adrenal Insufficiency United? Just let me know - it's what I do!!