Adrenal Crisis vs. Pre-Crisis Discussion
Cooley, Kim, Regan, Yedinak
“Pre-Crisis” for Adrenal Insufficiency is a somewhat new concept that has been gaining awareness within the endocrine world. The term and concept are good starting points to understand that maintaining proper balance within the complex factors of cortisol replacement – changing demands, illness, secondary symptoms – is a care continuum that requires our constant attention.
MyAI Patient Registry and Patient-Centered Outcomes Research
This session will describe the concept of patient-centered research as opposed to other kinds of research studies and its application to clinical problems in adrenal insufficiency. It will describe the MyAI registry as an example of patient-centered outcomes research. The rationale and goals for the registry will be reviewed along with some preliminary data from the registry. Future research directions and a current project will be highlighted.
ADRENAS Clinical Trial Updates
Overview of the Adrenal Therapeutics gene therapy program for classic Congenital Adrenal Hyperplasia.
Building a Patient Registry and Other Opportunities to “Be the Change”
How can we leverage our expertise and passion to drive change? What is a Patient Registry, and why should you consider joining one? What can the future look like with an active, motivated team of patients working toward a common mission? Join this session to learn more about CSRF’s registry goals and long-term plans, and how you can be a part of it all.
Emotional Health in Children
AIU Board Member Facilitator
An opportunity for parents to be present with each other and share the struggles, obstacles and emotions of parenting a child with Adrenal Insufficiency. We will then discuss the strategies and some of the resources available to best handle situations that many of us have in common.
Glucocorticoid-Induced Adrenal Insufficiency (virtual session)
In this session, we will discuss risk factors for glucocorticoid induced adrenal insufficiency, clinical presentation, diagnosis, approach to taper of glucocorticoids, and long-term management. Special attention will be paid to strategies surrounding glucocorticoid withdrawal syndrome and prevention of adrenal crisis.
Glucocorticoid Withdrawal Syndrome: An Official Name Gives Hope for Better Management and Outcomes
One of the first steps to gaining traction and attention to a cause is to establish it in the first place. Though there are no guidelines developed for GWS, our specialists are aware of it and beginning the work to make sure this phase of recovery is better managed by all doctors who provide care to us after treatment for Cushing’s. Dr. Auchus and his colleagues published a paper in 2022 on the topic and he will share their findings from literature reviews and real-life experience treating patients in high-volume centers. This session will also cover strategies for dosing and tapering, HPA axis testing, and other types of treatment / symptom management.
Growth Hormone and Thyroid in Adults
What is Adult Growth Hormone Deficiency (AGHD) and how does it differ from the childhood version? Learn about current issues in short- and long-term treatment for AGHD plus how to transition from childhood to adult with growth hormone deficiency.
Why is the thyroid important? What are thyroid nodules, and what happens when the thyroid is abnormal? Discuss treatments for high and low thyroid including the differences between synthetic and dessicated replacement.
How often do you need to follow up with your provider when you have these conditions?
The Healing Properties of Conscious Food Choices and Adapted Movement in Cushing’s and Adrenal Insuffiency: Meeting the Challenges of Our Bodies’ Changing Needs
Food and movement are among our essential physiological needs and they create wellness and bring us together as a community. This session will explain these essential physiological needs and how they can optimize health and wellness. What happens when these needs are not met will also be taken into account. Evidence based nutrition and exercise practices will be presented along with ways to incorporate into personal food and movement initiatives. Diet, the weight loss kind, will be discussed and the best ways to optimize energy and live life to the fullest. This course considers where attendees are today and endocrine and other life challenges however the information in this presentation is not intended as medical advice, medical nutrition or exercise therapy or individualized nutrition counseling/coaching.
Highlights from the Recent Global Cushing’s Consensus Meeting: What it Means for Providers AND Patients
A couple of years ago the Pituitary Society convened more than 50 researchers and clinicians from all over the world with Cushing’s expertise to review recent evidence and clinical practice data from 2015 to present. Consensus opinions were published online in Lancet Diabetes and Endocrinology, October 2021: Consensus on diagnosis and management of Cushing’s disease: a guideline update (https://www.thelancet.com/journals/landia/article/PIIS2213-8587(21)00235-7/fulltext or scan the QR code – free with free registration on the website).
What does that mean for patients? Chair of the consensus guideline, Dr. Maria Fleseriu and co-author Dr. Richard Auchus will discuss the need for consensus review and the resulting update recommendations for all stages of the Cushing’s Disease journey from testing caveats to treatment management and long-term follow-up. Each patient is different and individualized management is key!
A Historical Review and Recent Innovations in Surgical Methods for Cushing’s Disease, with Patient Stories
Dr. Harvey Cushing would be amazed at the surgical possibilities that exist today – they have come a long way since he first put our disease on the map in 1912 after documenting a “polyglandular syndrome” caused by a malfunctioning pituitary gland. Pituitary surgery options can feel very overwhelming to the patient who must consider them, and research shows that your best outcome will be in the hands of a highly skilled surgeon. They are entering “high priced real estate territory”, after all! Dr. Fernandez-Miranda will share a fascinating review of the evolution of pituitary surgery with recent innovations that have created additional options for patients.
Ali Daoud will tell his story that began several years ago as a pediatric patient in Lebanon with two failed surgeries and no additional options in a country that was experiencing severe economic crisis. His persistence and efforts to survive Cushing’s with so many roadblocks in the way still led him to Stanford and remission at the hands of Dr. Fernandez-Miranda.
Hydrocortisone Therapy in Pediatric Adrenal Insufficiency
In this session Dr. Geffner will review the normal function and control of the adrenal glands to understand the principles and challenges of hydrocortisone / glucocorticoid replacement. New approaches coming down the pike to treat Adrenal Insufficiency will also be introduced.
IEP, 504, and Health Plan Work Group
Drs. Jon Pede and LaTasha Holt, both teachers, will help brainstorm accommodations and modifications that can help your child succeed in school. Bring your ideas and join the discussion.
If You’ve Seen One EMS System….
Well, the answer is “you’ve seen one EMS system.” Calling 911 for an ambulance can lead to a wide variety of responding agency types and variable levels of EMS providers. Dr. Cooley will provide an overview of the different types of EMS systems and providers out there, how different systems are regulated and what role the EMS Medical Director plays. He will also discuss different ways to work within the system, including new treat and release options, to optimize care for patients with Adrenal Insufficiency or other rare conditions.
Intro to Gene Therapy
Do you love biology and medical technology? Even if you’re just curious about novel therapies, this session is for you! Hear about the big moments in the history of scientific discovery that inspired the concepts and ultimately built the practices we use today when creating and administering a gene therapy. Learn how gene therapies are studied, approved, and how they are very different than drugs, plus some of the differences between participating in a clinical research trial for a gene therapy vs a traditional drug, biologic, or medical device. You’ll leave with an idea of where the gene therapy approach comes from, what types of conditions might be good targets for gene therapy, and what to expect if you participate in a clinical trial or receive an approved gene therapy.
Legislative Advocacy with Danny’s Dose and Stand for Children
Danny’s Dose Founder and President, Darlene Shelton, will share successful experiences and strategies in her campaign to pass legislation enabling paramedics to treat patients based on the Emergency Orders of their specialist including administering patient-carried specialty medications. She will also share tips on the importance of building relationships and being part of a cohesive solution to a problem.
Stand for Children is a statewide advocacy organization that helps parents learn how to get involved and have an impact. So many decisions that impact our kids and families get made by elected officials, often in your state legislature. It’s very hard to know how these decisions are made, how to have your voice heard. State organizing director Joy Marshall has been a community organizer for 35 years, and will help explain how you can be involved.
Living with Adrenal Insufficiency: A Patient’s Perspective
Living with AI can be a challenge, but it isn’t an impediment to a healthy, happy life. Join Mark as he shares some of his experiences living with AI. From the early years of his diagnosis through his adult years, he has encountered challenges and found solutions allowing him to live a healthy fulfilling life. Mark will discuss in detail how he has navigated through a successful career and personal life allowing for travel and participation in clinical research studies.
Management of Hypopituitarism: Adrenal Insufficiency, Growth Hormone Deficiency, Diabetes Insipidus, Hypothyroid, and More
Learn about normal pituitary function and interaction between pituitary hormones. Review causes of and treatment for hypopituitarism including what to expect during clinical evaluation. Find out why Diabetes Insipidus is getting a new name and future directions for treatment of hypopituitarism including new forms of glucocorticoid replacement that are being studied.
The Neuropsychology of Cushing’s: Insights into the Brain, Cognition, and Emotion
Based on a decade of Cushing’s patient studies from Emory University Hospital, Dr. Hickle will share her work and some thought-provoking discoveries she and her team have made along the way. We know from personal experience that things are different after even a successful surgery, and impact to cognition, memory, and focus affects everything we do. Neuropsychological assessments can offer patients identification of and clinical validation for the hard-to-explain ways we are impacted in these areas. Dr. Hickle will review the current literature available on long term cognitive outcomes in patients with Cushing’s, and will provide results from studies completed at Emory deepening the understanding of the complex after-effect, which will hopefully lead to better options for the impairments that persist long after biochemical control has been achieved.
Parent and Student Rights in K-12 Schools
Learn about your rights and what to do when you and your child’s school do not agree on accommodations and services under the ADA, Section 504 of the Rehabilitation Act, or the IDEA (IEPs).
Parents Ask Anything – Adrenal Insufficiency, Adult Patient Panel
Parents are welcomed to bring all their questions to this panel of AI adults.
Patient-Provider Two-Way Town Hall: Interactive Q&A
The full conference will be in attendance as we chat with many of our Specialist presenters on a spectrum of topics that affect all patients across the cortisol spectrum.
Practical Tools to Optimize Sleep and Manage Insomnia
One of the most common effects that plagues us at both ends of the cortisol spectrum is dysregulated sleep. Dr. Geer will review data from her work to identify solutions for patients who experience difficulty with sleep due to cortisol disruption.
Primary Adrenal Insufficiency: Considerations in Children and Teens
A discussion about the causes of Primary Adrenal Insufficiency, hormone deficiencies, treatment, and considerations for children and teenagers.
Secondary Adrenal Insufficiency Considerations in Children
Discuss the definition, causes, and medical abnormalities of Secondary Adrenal Insufficiency and review the unique treatment principles of secondary vs. primary.
Social Security and Long-Term Disability Benefits
Disability Attorney Scott Sell will discuss Social Security disability benefits and private long-term disability insurance policies. This is a “nuts and bolts” practical conversation. He will describe the laws and rules that govern how these benefits work and how a disabled person goes about proving that they are entitled to receive them.
Stress Dosing in Children: What to Do During an Illness, Surgery, Etc.
Review the principles of prevention and early recognition of adrenal crisis and appreciate how an adrenal crisis is diagnosed. Understand the principles of home and emergency treatment of a crisis.
Transitioning to Adulthood: From Caterpillar to Butterfly!
We will discuss the process of transition to adulthood that could ideally occur over several years and how you can prepare your child for this eventual change. We will consider ways to establish independence and self-care.
Tweens, Teens, and Young Adults Ask Anything
This private session will provide a safe and private space for tween, teens, and young adults to ask questions about living with AI. No question is off limits. Parents please sign up your child for this when you check in.
What Happens Before and After Surgery for Patients with Cushing’s Sydrome?
Patients arrive at their diagnosing doctor in so many ways – directly, with florid and rapid onset Cushing’s that cannot be denied, or eventually, after viSsiting many individual doctors who did not see the bigger picture or connect some of the dots. Some patients have never had any testing, and some have pages of test results. Where do we begin, how do we honor the unique aspects of each case, and how do we get to the correct diagnosis?
Recovery from Cushing’s creates another need for individualized care for the patient, and this isn’t always given enough attention. What can you do to feel as prepared as possible, or even have a plan in place, for what comes after surgery or radiation?
This mostly off-the-cuff session invites dialogue with the audience, so feel free to bring your questions.
What is Special Education and 504?
We will cover the basics of special education and 504 plans including eligibilities, processes, what parents should know, tips to navigate the school system, and resources for parents. This will be a session for parents/families who are new to special education or 504 plans or parents/families who may need some additional information.
Why Am I Still Waiting to Be Seen? Understanding a Visit to the Emergency Department
Being seen in the Emergency Department for any reason has always been confusing at best, and when combined with Adrenal Insufficiency or other rare conditions, it can be overwhelming. Now, in the post-COVID world of staff shortages and increased ED use, things are only getting worse. By peeking behind the curtain, Dr. Cooley will provide an overview of the different types of EDs out there, explain who’s who in the department and how the different staff and physicians approach patient care. In addition, he will share some insider knowledge on how to give patient information the “right way” to the staff to hopefully reduce some stress the next time a trip the ED is needed.
Working with Chronic Conditions
To Disclose your Disability or Not to Disclose? Anessa Powell, owner of AllAbility Recruiting, a disability recruitment firm, will discuss the various reasons you should or should not share your disability when seeking employment…the answer may not be what you think!
Acclimating to a New Normal: Intimacy, Self-Esteem, and Body Autonomy
Going through a complicated rare disease and coming out the other side changes almost everything about us. It can be uncomfortable trying to match up to previous expectations (our own and those of others), and sometimes impossible to resume activities and roles exactly the way we participated in them before. There can be feelings of loss and grief related to the inability to “get back to business as usual”.
In a way, it is also a clean slate for us to re-write our story, to reclaim what is important and carve a new path that celebrates the victories and possibilities of Life 2.0. Every one of us is a worthy, complex treasure regardless of the damage we have endured. Come chat about it with a presenter who had been affected by Cushing’s and its after-effects and is passionate about equipping others with tools to grow.
Caregivers Only! Round Table Chat
It can get heavy to care for someone with a rare disease, but there can also be bright points where you figure out ways to ease the burden or find peace and humor along the way. This session is for Caregivers only and will be a safe space to speak, listen, and share/learn “best practices” that have made the medical journey less overwhelming or negative.
Caring for Our Caregivers – Patients Only!
If we are lucky, we have loved ones and friends who care about us, take care of us, and learn about our disease as we go through it. Those closest to us experience our darkest times too, and are affected in ways we see and never see. Some people struggle in the role of caregiver, especially if they’ve never been that or certain roles they learned in childhood were never challenged. This session is for Patients only, to explore ways to stay connected to our caregivers with open dialogue and grace.
Congenital Adrenal Hyperplasia
Join Dr. Richard Auchus for a focused discussion about some of the issues and challenges of living with and treating CAH.
Creating Community: Adrenal Insufficiency Affected Adults
Feeling alone in your daily walk with Adrenal Insufficiency? Join Anessa Powell as she shares why having a community is vital for a life worth living. Leave with new connections that can foster building your community for the future.
Creating Community: Parents and Caregivers of Patients with Adrenal Insufficiency
Feeling alone, overwhelmed, and a little unprepared sometimes in your daily life caring for someone with Adrenal Insufficiency? Join Anessa Powell as she shares why having a community is a vital support while you support your loved one. Leave with some new ideas and connections that can foster building your community for the future.
Danny’s Dose – Emergency Preparedness
When Darlene Shelton and her family realized how many gaps exist in emergency protocols pertaining to proper care of patients with rare/chronic conditions, they decided to be part of the solution. In her time at the table with various state and national EMS associations and professionals, Darlene was able to learn good solutions that each family should put in place prior to that emergency call. With their help, she developed an educational session with outlines, templates and alert products to help each family have a good plan in place with the local EMS transport and emergency department for better peace of mind.
A Deeper Dive into the Short-Term and Long-Term Cognitive Effects of Cushing’s
Dr. Hickle continues the topic from Friday and takes your questions.
Digging Deeper: Thyroid and Growth Hormone
Join this discussion that continues the topic presented earlier on Saturday.
Drug Development: From Concept to FDA Approval
Join this candid cortisol-focused discussion about origin stories, drug discovery, clinical trials, the FDA, and why a company would undertake work that can take 15 years to complete and only has a 1% chance of success.
Furthering the Topic for Athletes: Food and Movement
Continuing the topic from the main session on Friday, Deanna will lead this smaller group conversation to address specific goals and challenges shared by attendees who currently live or formerly lived an athletic lifestyle.
Furthering the Topic for Non-Athletes: Food and Movement
Continuing the topic from the main session on Friday, Deanna will lead this smaller group conversation to address specific goals and challenges shared by attendees who do not / did not incorporate an athletic routine into their lifestyle.
Hormone Replacement Therapy in Hypopituitarism
Scientific advances have provided us the opportunity to consider replacement of any pituitary hormone that is deficient. Many patients with Cushing’s end up with hypopituitarism, some with panhypopituitarism. It can become a bit of a dance to keep them all at optimal levels, but the benefits can be worth the effort. Dr. Dobri will share her expertise on the options, with experienced insight into patient choice and what replacing a deficient hormone, or choosing not to, could mean in the long-term.
Primary Adrenal Insufficiency in Adults
Primary Adrenal Insufficiency requires daily replacement therapy but also dose increases during significant illnesses. In this breakout session we will review standard replacement regimens, pearls and pitfalls for monitoring and medication titration, sick day rules and emergency treatment, and new treatments and testing approaches on the horizon.
Specialty Medications and Clinical Trials Demystified: Making Informed Decisions when Rare
Finding out you have a rare disease without great treatment choices can be overwhelming, and not all doctors are aware of or willing to offer every option that exists. You may have heard about medication or clinical trials but don’t know where to start for accurate information. This session will cover both from the point of view of a pituitary research nurse with a clinical background at a high-volume pituitary center that regularly offers both to appropriate patients.
Stress Dosing 101 for Adults
What biochemical changes are happening in the body during an adrenal crisis that require stress dosing? How can you know if what you are feeling is acute AI? How can you stay proactive and stress dose to avoid an AI crisis?
Why Do I Still Feel So Lousy After Cushing’s Surgery?
Dr. Yuen explores the first six months post-surgery with some slides, discussion, and Q&A.