Adrenal Insufficiency United

Adrenal Insufficiency United We are a group of concerned family members who are striving to bring everyone of any age or disorder

Anyone and everyone affected by Adrenal Insufficiency is welcome in this group. We will work to compile resources from all organizations working with those with Adrenal Insufficiency and make them available to all. Only by working together will we be able to make the policy changes needed to treat Adrenal Insufficiency properly in the field. Preventing further complications and death from Adrenal Crisis is our mission. Adrenal Insufficiency United is here to help educate and create awareness for Adrenal Insufficiency.....it's not a support page in the sense that we pose questions and talk back and forth like our support group. DISCLAIMER: Adrenal Insufficiency United is an organization of concerned family members, friends and affected adults. We are not a medical organization, and information contained in this website or on our pages is only intended to provide resources for those affected with Adrenal Insufficiency. No information on our website or pages is to be taken as medical advice. Please consult with your physician before making any changes to your medical regimes. Links to other websites, doctors, and resources are done as a service to those seeking additional information and support. We do not endorse or recommend any specific organizations or doctors and are simply listing then as resources for individuals to research on their own. AIU is not responsible for the content of other publications or websites reached from our links.

Adrenal Insufficiency United has had a long and productive relationship with Bridge Bio. BridgeBio is very involved with...
03/30/2026

Adrenal Insufficiency United has had a long and productive relationship with Bridge Bio. BridgeBio is very involved with the CAH community specifically and we are fortunate to have them, once again as a sponsor of our AIU 2026 Summit on Adrenal Insufficiency.

Please remembers there is still time to sign up and meet with other AIU members, specialists in adrenal insufficiency throughtout the country and our sponsors. Our sponsors are the ones often times responsible for producing the medications that we use and it is great to have so many involved in 2026.

Register at www.aiunited.org to be there in person April 23-25 in Minneapolis or to attend virtually.

Earlier this week, AIU spoke with Pituitary World News and got more details about their exciting new edveavor (as of las...
03/26/2026

Earlier this week, AIU spoke with Pituitary World News and got more details about their exciting new edveavor (as of last year), Adrenal World News. We are looking forward to engaging with them more and they want to work to help bring our members information relevant to you.

Also, they are a nonprofit and will be attending the conference in Minneapolis to connect more with our members. While there they are planning to record a podcast with our very own Jason Dunn. Jason is an RN and is on our Board of Directors as Medical Liaison. He hopes in the podcast to bring to light how many people are presenting with AI, and how they present initially. New diagnostics and treatments. Sick day rules, and crisis vs insufficiency. How people go about finding appropriate medical information/resource resources.

Remember it is not too late to register so you, too can meet AIU board members, interact with Jorge from Adrenal/Pituitary World News and more. FOr more information and to register, www.aiunited.org

Thanks to all who took our conference interest survey! Congratulations to our winner Sarah H. Sarah, check your emails. ...
03/23/2026

Thanks to all who took our conference interest survey!

Congratulations to our winner Sarah H.
Sarah, check your emails.

We know financial hardship means many of you cannot attend our conference. Remember our Virtual conference option is $50 and will give you access to all the main sessions as well as some virtual discussion groups. Find all the options for attendance on our website https://aiunited.org/registration/

1 month from today we will meet again in Minneapolis!! Remember there is both in-person and virtual registration now at ...
03/23/2026

1 month from today we will meet again in Minneapolis!! Remember there is both in-person and virtual registration now at www.aiunited.org/events

The hotel will need final numbers in the next couple of weeks so do not put off registration much longer!!

Since Latasha's bio was put together she has also said she will help with advocacy for schools, as she is well-versed on 504s, IEPs and health plans. You don't want to miss Dr. Holt speak on any of the topics she is well-versed on!!

Educator, Researcher, & "Double AI" Advocate Dr. Latasha Holt is an Associate Professor and Assessment Coordinator at the University of Louisiana at Lafayette, but her most vital research happens at the intersection of theory and real-world survival.

Driven by her daughter’s journey with adrenal insufficiency and epilepsy, Dr. Holt has dedicated her career to bridging the gap between complex academic concepts and the lived experience of those with exceptional needs. A published author and Ph.D. in Curriculum and Instruction, she has spent the last four years leading faculty learning communities in exploring the integration of Artificial Intelligence (AI) across disciplines, examining its profound implications for pedagogy and academic identity.

Her work is rooted in the belief that real change only begins when we are brave enough to ask disruptive questions. Beyond the classroom, Dr. Holt is a dedicated force for systemic reform. She serves on the boards of Danny’s Dose and volunteers with NORD and Make-a-Wish. Whether she is addressing physicians, educators, or political leaders, her mission remains the same: to transform "invisible" struggles into visible action and foster a more appropriate, democratic landscape for every learner and patient.

Happy first day of spring!!What are you looking forward to this spring?For us at AIU, in addition to warmer temps, flowe...
03/20/2026

Happy first day of spring!!

What are you looking forward to this spring?

For us at AIU, in addition to warmer temps, flowers growing and the end of school, we are also looking forward to our 2026 Summit on Adrenal Insufficiency.

Today we bring up another speaker. Dr. Craig Cooley. Dr. Cooley has been a regular at our conferences and is a member of AIU's Medical Advisroy Board. He will be speaking on something important to everyone with adrenal insufficiency, EMS / ER Systems. As an emergency room doctor he brings a unique perspective to this topic.

Craig Cooley, MD, MPH, EMT-P, FACEP, FAAEM, FAEMS is currently the EMS Division Director and Program Director for the EMS Fellowship at University of Texas at San Antonio and an Associate Clinical Professor in the Department of Emergency Medicine.

He is also Deputy Medical Director for San Antonio Fire Department and Medical Director for Bexar County ESD-3. In these roles, Dr. Cooley provides radio/phone and on-scene medical control for SAFD and surrounding agencies, provides medical oversight during state disaster responses, and educates fellows, residents, and medical students through the different programs and rotations he helped develop that are offered at UT San Antonio.

Among his involvement in several regional, state and national organizations, Dr. Cooley is a member of the Texas Governor’s EMS and Trauma Advisory Council (GETAC) Cardiac Subcommittee, Chair for the EMS Section for the American Academy of Emergency Medicine (AAEM), is Chair-Elect for the EMS Section of the American Collage of Emergency Physicians (ACEP), and serves on multiple committees with the National Association of EMS Physicians (NAEMSP).

In addition to speaking frequently at the program and local level on several EMS topics, Dr. Cooley continues to speak regionally, nationally and internationally on a variety of topics in EMS and Emergency Medicine.

To hear Dr. Cooley and so many others, register here, www.aiunited.org

03/19/2026

If you applied for a conference stipend before March 16th check your emails. If you don't see anything check in your spam.

AIU gets asked a lot if we can hold events in different places. We thought it would be interesting to plot out where we ...
03/19/2026

AIU gets asked a lot if we can hold events in different places. We thought it would be interesting to plot out where we have either held conferneces or lunch and learns, and also where we have attended other events over the years.

Being a fairly grassroots, all-volunteer nonprofit you can see AIU has spread throughout the country to bring information to patients and EMS workers.

AIU is open to doing lunch and learns in cities where you, our members can secure a place to host in odd numbered years. AIU was also present at a NORD Rare Disease Day event in Nashville in February and will be at NCCN conference next week in Orlando. Our large conferences are in even numbered years. This year our large conference is in Minneapolis April 23-25. We would love to see you there. To see our agenda, our speakers and to register please visit www.aiunited.org/events.

03/18/2026

Rare Patients Voice has a study for those with CAH. Their recent newsletter shows that study pays $25, that could be half your registration fee to the conference right there. And we have speakers and sponsors specific to CAH, don’t miss out!

Link to the study register for the Rare Patients Voice (and then look for study in congenital adrenal hyperplasia , https://rarepatientvoice.com/adrenalinsufficiencyunited/

Link for our conference, www.aiunited.org/events

AIU will be attending the National Comprehenive Cancer Network Conference next week to continue to bring attention to th...
03/17/2026

AIU will be attending the National Comprehenive Cancer Network Conference next week to continue to bring attention to the oncology community of adrenal insufficiency due to cancer treatments.

NCCN just published,https://www.nccn.org/patients/guidelines/content/PDF/immunotherapy-checkpoint-patient.pdf to educate on this very thing.

Reminder that at our conference in April we will also have sessions related to this, as we see it as one of the fastest growing causes of adrenal insufficiency, join us, https://aiunited.org/aiu_events/

Only a few weeks to go and lots more speakers to highlight here. Our agenda is packed!! https://aiunited.org/eventsNext...
03/16/2026

Only a few weeks to go and lots more speakers to highlight here. Our agenda is packed!! https://aiunited.org/events

Next up is Darlene Shelton, founder and Director of Danny's Dose. Her work has been integral in publishing the first National Emergency Treatment Guidelines for Adrenal Insufficiency and working state-by-state to change protocols so that EMS can inject self-carried meds, like our solu-cortef.

After her first grandson was unexpectedly diagnosed with severe Hemophilia B, Darlene and her family encountered a critical and dangerous gap in emergency medical care: protocols that prohibit paramedics and emergency department clinicians from administering patient-carried specialty medications. Recognizing the serious risk this posed—not only to her grandson but to countless individuals with complex medical needs—Darlene took action.

She co-founded Danny’s Dose Alliance, launching a mission to address systemic barriers within emergency care. What began in Missouri through collaboration with the EMS Association quickly revealed a nationwide issue affecting patients with rare and chronic conditions.

Conflicting protocols, fear of liability, and a lack of disease-specific education emerged as the core challenges. From this work, three primary goals were established: Modernize and change outdated EMS and emergency care protocols across the United States Develop disease-specific treatment guidelines and provide targeted education for paramedics and emergency clinicians Equip patients and families with emergency preparedness education to improve safety and outcomes.

Because of Darlene's busy schedule she will be presenting virtually (you can attend her session at the conference too), but Danny's Dose will have board member, and adrenal insufficiency mom, Latasha Holt at our conference (Latasha will also be an upcoming speaker highlighted here!!)

Registration is open now to be part of the 2026 Summit on Adrenal Insufficiency either in Minneapolis or virtually April 23-25, here https://aiunited.org/registration/

The AIU Summit is intentionally priced at just $50 so patients, caregivers, and healthcare professionals can access expe...
03/14/2026

The AIU Summit is intentionally priced at just $50 so patients, caregivers, and healthcare professionals can access expert education, crisis preparedness tools, and community support without financial barriers. Thanks to the generosity of our sponsors and donors, this national rare disease conference is accessible to everyone who needs it.

Education that could save a life shouldn't be out of reach.

Your $50 Registration Includes:
• Expert-led sessions from physicians and specialists
• Practical education on managing adrenal insufficiency and preventing adrenal crisis
• Opportunities to connect with patients, caregivers, and clinicians in smaller breakout sessions
• Access to both in-person and virtual programming
• Tools and resources to improve daily management and emergency preparedness

All of this for $50!! AIU worked hard to ensure that this would be accessible for most and we are here to help those who it is still a stretch for. There is a stipend request form on the registration link, https://aiunited.org/aiu_events/

We want this information and support in the hands of those who need it most, the patients and caregivers in our community directly affected by adrenal insufficiency.

We will be in-person in Minneapolis April 23-25, and online those same days!! And we would love to see you there!!




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