A Conference Well Done

I had shared in previous posts about the Adrenal Insufficiency United conference that was being help at the end of March in Portland. The conference was a huge success and the couple of weeks since have been a time and rest and recovery and time to move ahead with the momentum that we hope was created there.

A rare disease conference may differ from other conferences that you have heard of just by the nature of it. You see when you have a rare disease or a caregiver for a loved one with a rare disease there are not typically any local chapters of a support system near you, because by its nature it is rare and not enough people are nearby to establish something like that. So, when there is an opportunity for people from around the country to come together and meet in person it is invaluable. For us, it was the first time since prior to the pandemic that we were all together and what an event it was!!

There were over 300 people in attendance from all over the country and even Canada and Puerto Rico! We had Endocrinologists who we know have knowledge specifically related to adrenal insufficiency, as even within this discipline some may not be as knowledgeable of this rare disease. We had experts on education, workplace, sleep and nutrition. There were breakouts on parenting, different kids of treatment, taking care of caregivers and anything that people were interested in sitting at a table and starting to speak about with others. We had medical staff that was training people on how to administer our emergency injection to oneself or others. And for the first time we had childcare available so that adults could attend sessions distraction-free.

The conference started Thursday and most people were arriving Wednesday to be in the hotel for registration by morning. By the hotel reception at 5 on Thursday as I was walking from table to table and there were conversations and laughter among tables of new friends sharing stories. Some had met over our Facebook group previously, and some may had been at our previous conferences years ago, but friendships were built. And to those of us who had been working on this for months, our work was well worth it in those moments.

Personally, I led a group for parents on the emotional health of our children. I started this group very honestly sharing that I was not first choice or even second to lead this group, but with the mental health crisis in our nation it was not possible to get someone in to speak on it. I have my Bachelor's Degree in social work and psychology and have spent much of my life as a parent helping other parents with challenges in parent children with special needs and/or rare disease. I shared in detail the ups and downs our life since my son's diagnosis with Addison's and then I encouraged others to share their experiences and ask questions. I believe that this was cathartic for all of us and left all parents with encouragement to not only take care of their children's mental health, but also their own.

Since being back I have been working on motivating people to work together on putting together the next conference. I want to use the energy and excitement of this one while it is fresh in everyone's mind and use the skills and talents that everyone has to bring together a lot of collaboration instead of just a few people working on it. I have big dreams on that. As parent representative for the group, I have also committed to doing virtual support meetings twice a month. Our first was yesterday during the day and there were six moms on there - some had been at the conference, some had not, but all came for the same reason - to connect with others that just "get it".

All of this to say whatever the circumstance I encourage people to find others with shared circumstances, no matter how rare and sharing with others who can identify with it. There is healing to be done for everyone that can be done in connecting with similar life experiences.