Support for Those Living with Adrenal Insufficiency

Conference on Adrenal Insufficiency

Registration for AIU’s first ever conference devoted to adrenal insufficiency is now open!

We are thrilled to open registration for our March 23-25 conference held in Kansas City, MO.      With an amazing line up of professionals addressing a wide range of topics this conference is not to be missed.

AIU is run by those directly affected by adrenal insufficiency. With the help of our members and FB family we chose a wide variety of topics important to the AI community. We are excited to present education, resources, and camaraderie all under one roof!

Conference Information
  • Location:  Embassy Suites by Hilton Kansas City International Airport; 7640 NW Tiffany Springs Parkway, Kansas City, Missouri, 64153 (all rooms come with a free hot breakfast)
  • Dates: March 23 – 25, 2018
  • Time: Starts Friday at 12:00 noon  Ends Sunday at 1:00 p.m.
  • Meals: Friday night reception with Hors D’oeuvres and Lunches on Saturday and Sunday
  • Cost
    • $60 (teens and adults age 13 and older)
    • $40 (children ages 3-12)
    • $200 Family Rate (includes 5 family members in the same household ages 3 and up)
    • children 2 and under free
  • Child Care: On site child care available for an additional fee
  • REGISTRATION LINK! A link to reserve lodging will be sent when your registration has been received and processed.
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  • Download our Sponsorship Packet
NEW FREE TRAINING ADDED FOR EMS/SCHOOL NURSES AND OTHER EMERGENCY PERSONNEL. SIGN UP HERE

AIU could use your help! Thanks to the generosity of the of the Murrow family in Mo, as well as all those who donate and raise funds for AIU, we have a great start on conference funding. We are still actively looking for sponsors and vendors to participate. If you know any businesses or individuals who would like to be involved, please let us know at contact@aiunited.org   Subject line text “sponsors”


OUR AMAZING LINE UP OF SPEAKERS INCLUDES:
Mitchell Geffner MD

Dr. Geffner is Chief of the Division of Endocrinology, Diabetes, and Metabolism at Children’s Hospital Los Angeles (CHLA), Professor of Pediatrics at the Keck School of Medicine of USC, the Ron Burkle Chair in the Center for Endocrinology, Diabetes, and Metabolism, and Co-Director of the CAH Center of Excellence at CHLA.  He graduated from the Albert Einstein College of Medicine (1975); was a house officer at LAC-USC Medical Center (1975-1979); and completed his fellowship in Pediatric Endocrinology at UCLA (1979-1982). Dr. Geffner is Past-President of the Pediatric Endocrine Society (2014-2015).  Dr. Geffner is principal investigator at CHLA of the NIH-sponsored TODAY2 trial that is studying long-term outcomes of youth with T2DM and national consultant to the NIH-sponsored PHACS study of endocrinological/metabolic manifestations of HIV infection and its treatment in childhood.  He has served on the American Board of Pediatrics Sub-Board on Pediatric Endocrinology; as a Director of the Pediatric Endocrine Society; and is an advisor to the MAGIC Foundation, the Pituitary Network Association, and CARES Foundation.  Dr. Geffner is Associate Editor of the journal, Pediatric Endocrinology Reviews, pediatric endocrinology editor for UpToDate, and co-editor of the textbook, “Pediatric Practice:  Endocrinology” (McGraw-Hill).

Topics covered:

Adrenal Insufficiency in Childhood: In this lecture, I will review the causes, presentations, diagnostic testing, and management of both acute and chronic adrenal insufficiency in childhood.

CAH/Adrenal Insufficiency: New Approaches and Treatments:
In this lecture, I will discuss new paradigms for hydrocortisone dosing (for AI and CAH patients) including the cortisol clearance test. I will also review new approaches to treatment, including pump-administered hydrocortisone, slow-and dual-release formulations of hydrocortisone, and new drug (non-hormonal) approaches (for CAH patients), including antagonists to the receptor to corticotropin-releasing hormone (CRH) in the pituitary gland (decreasing ACTH), inhibitors of male hormone (testosterone) synthesis, and adrenolytic agents (that partially “poison” the adrenal glands).

CAH/Adrenal Insufficiency: New Approaches and Treatments:
In this lecture, I will discuss new paradigms for hydrocortisone dosing (for AI and CAH patients) including the cortisol clearance test. I will also review new approaches to treatment, including pump-administered hydrocortisone, slow-and dual-release formulations of hydrocortisone, and new drug (non-hormonal) approaches (for CAH patients), including antagonists to the receptor to corticotropin-releasing hormone (CRH) in the pituitary gland (decreasing ACTH), inhibitors of male hormone (testosterone) synthesis, and adrenolytic agents (that partially “poison” the adrenal glands).

 

Anthony P. Heaney  MD, PhD

Dr. Heaney is a Professor at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA). His primary areas of clinical and research interest involve the pathogenesis of pituitary tumors and exploiting novel molecular targets to develop innovative treatments for pituitary tumors, and other neuroendocrine tumors. A Fulbright scholar, Dr. Heaney is a Fellow of the Royal College of Physicians (UK), and member of several professional organizations, including the Endocrine Society, the Pituitary Society and the Society of Endocrinology. He has written numerous articles for such peer-reviewed publications as Journal of Clinical Investigation, Nature Medicine, Clinical Endocrinology, and Pituitary, and he has compiled book chapters for Baillieres Clinical Endocrinology and Metabolism, Oxford Textbook of Endocrinology and Endocrine Updates. Dr. Heaney is President of the International Pituitary Society and Associate Editor for the Journal of Clinical Endocrinology & Metabolism.

Topics covered:

What are the causes of AI in adults and when do I need to stress dose?

What is adrenal crisis?

The causes of adrenal insufficiency in adults including the distinction between primary and secondary AI. Discussions will include: when stress dosing is needed, how taking too much steroids can be harmful, the causes signs and management of adrenal crisis events including how to avoid them.

 

Larry Kurt Midyett  MD

Dr. Midyett, attended the medical school at the University of Kansas and completed his residency in internal medicine and pediatrics and his fellowship in pediatric endocrinology.

Larry Midyett is a friendly and warm pediatric endocrinologist, pediatrician, internist, and primary care doctor caring for the Overland Park Pediatric Specialty Group. Dr. Midyett obtained his medical degree from the University of Kansas. He also completed his residencies in pediatrics and internal medicine at the same university and fellowship in pediatric endocrinology at Children’s Mercy Hospital.

Dr. Midyett is a part of Overland Park Pediatric Specialty Group. He is board certified by the American Board of Internal Medicine and specializes in pediatric endocrinology. His clinical interests include pediatric endocrine disorders, diabetes, intensive insulin therapy and diabetes technology, helping pediatric patients transition to adult care, growth disorders, turner syndrome. He has treated and managed a diverse range of medical dysfunctions and is committed to providing the best comprehensive medical care available.

Topic:

Exercise and Adrenal Insufficiency:  A more detailed description coming soon.

 

Bronwen Erickson BSN; MSN-FNP

Bronwen is a nurse practitioner board certified in family medicine. She received her BSN from Texas Tech University Health Sciences Center and her MSN-FNP from Texas A&M University. She has extensive clinical experience in treating metabolic and neuroendocrine disorders, digestive disorders, and immune and autoimmune disorders. She is passionate about teaching patients how to triumph over complex illness and to lead vital and fulfilling lives.

 

 

Topic:

The Role of Toxins/Biotoxins’ in Secondary AI

Scientists are just beginning to understand the role of toxins/biotoxins as they relate to Secondary Adrenal Insufficiency (SAI). Emerging evidence points to endocrine disruptors, mitochondrial dysfunction and chronic inflammatory response as key mediators in the rising incidences of SAI. We will explore the potential causes of SAI in relation to these mediators and what those suffering from AI, whether primary or secondary, can do to avoid and eliminate these potential triggers and significantly improve their quality of life.

 

Kyle Gillett  PhD, LMFT

Kyle received his Ph.D. in Marriage and Family Therapy from Texas Tech University. As a licensed Marriage and Family Therapist, Kyle has worked in a variety of clinical settings over the last seventeen years. His career has focused on treating both boys and girls, with specialization in trauma, processing difficulties, eating disorders, depression, anxiety, OCD and difficult family systems. Kyle is a founder of the Solstice family of programs—located in Layton, UT and Asheville, NC. He has served in many roles including Primary Therapist, Clinical Director, Admissions Director, Program Director, and Executive Director. He is thrilled to have founded Equinox with a group of wonderful partners, and once again serve in the role of Executive Director.

Kyle is a Level 1 CrossFit Trainer and enjoys everything CrossFit along with a variety of other sports. His favorite things include spending time with his beautiful wife, four wonderful sons, sweet baby girl, and his dog, Shadow, playing all sorts of games, hiking, camping, fishing, reading, watching movies, etc.
Topics:
Emotional Health for adults with chronic conditions
Emotional Health for children with chronic conditions
More detailed descriptions coming soon.
Dr. Ron Hunninghake, MD
Chief Medical Officer Riordan Clinic Wichita, Kansas  Dr. Ron, as patients fondly refer to Ron Hunninghake, MD, is a native Kansan. He served his medical internship at Wichita’s Wesley Medical Center in 1979 and completed his residency at the Smoky Hill Family Practice Program in Salina, Kansas in 1982. Dr. Ron began his career as a small town doctor in Minneapolis, Kansas. Later, he joined nearby Salina Family Physicians and was instrumental in founding WellPlan, a comprehensive lifestyle modification program. He joined the Riordan Clinic in 1989 as its Medical Director. In addition to his current role as Chief Medical Officer at the Riordan Clinic, Dr. Ron has made multiple trips to Japan, Spain, Ecuador, Columbia, New Zealand, Canada and South Korea to lecture on The Riordan IVC Protocol for Cancer. He is currently the elected chairman of the International Schizophrenia Foundation and has been a regular presenter at their Orthomolecular Medicine Today conference that has been held annually in Canada for the past 39 years. At the Riordan Clinic, he has presented more than 300 lectures dealing with all facets of nutrition, lifestyle, and optimal health. He has co-authored three books on subjects including inflammation, energy-boosting supplements, and how to stop pre-diabetes.
Topic:
Dr. Ron will be discussing nutritional deficiencies in patients with chronic disease. A more detailed description coming soon.
Lisa Anderson MSW, LISWS (inactive) & Ted Wong
Fate and e-harmony tossed Lisa and Ted together and the world has never been the same! Lisa, wishes she had paid more attention to her patients/families who were teaching her how to survive with a chronic illness. Ted, the contemplative wood whisperer, thought Miami University students tried his patience and nerves, until he met Lisa. They are the dynamic duo when providers display a lack of knowledge, are complacent or fail to listen to the experts on Lisa’s SAI. When Lisa is not able to self-advocate, Ted steps in. No one expects the strong silent man with the pony tail to become a whirling dervish, but he does it well! They enjoy playing in the dirt (gardening), antagonizing residents who don’t listen, annoying Delta Airline agents with too many carry-ons, herding cats and kids, dumpster diving and laughing together.
Topics:
Self-Advocacy: Learn skills in the art of self-advocacy. How to get your message across, obtaining what you think is needed, building your medical team’s willingness to help (now & in the future), coaching providers to think outside their box, dropping bread crumbs on the path to get what you need/want, documenting to support your advocacy, and knowing when to hand off to someone else.
Advocacy for others: Whether for your child, partner or someone else, advocating for an AI patient is difficult. Learn skills to support your AI patient’s needs/desires, communication approaches, tactics to get providers to listen and respond positively, documenting to support your advocacy, and knowing when to switch strategies.

PANELISTS
Panel Members for a Discussion on protocols, advocacy and legislation for those with rare disease.
Darlene Gail Shelton  Founder/President Danny’s Dose
Let me introduce myself, Darlene Shelton, the driving force to this campaign but also the grandmother to a wonderful little boy, DANNY, who is the heart behind our desire to prevent morbidity and mortality for the population of people with rare disease, chronic illness and special medical needs who require specialized treatment and/or receiving their patient carried specialty medications in emergencies.
The Danny’s Dose Alliance got EMS Special Medical Needs legislation passed in Missouri in just 2 years and are currently working toward all other states. Learn more about Danny’s Dose and our collaboration for RareEmergencies.
Tim Boyd, MPH     NORD  Director of State Policy

As state policy director Tim works with rare disease groups and individuals from around the Nation Tim will be sharing more about NORD and their efforts to bring rare communities together to advocate for legislation to improve and save the lives of those living with rare disease. He will share ways in which you can become involved on a State and National level along with some of the issues NORD is tackling right now.

Tim will also be discussing NORD’s Rare Action Network.

The Rare Action NetworkSM (RAN) extends NORD’s historic leadership in national advocacy to the state and local level. Through RAN, we connect individuals and organizations within states and provide the training and resources they need to become effective advocates for policies that support the rare disease community. Support is needed from all stakeholders to build a strong, sustainable and effective advocacy network on behalf of the rare disease community.

Rep. Jeanie Lauer, a Republican, represents part of Jackson County (District 32) in the Missouri House of Representatives.

She was elected to her first two-year term in November 2010. She currently Chairs the House Workforce Development Committee, and serves on the Crime Prevention and Public Safety Committee and the Special Committee on Innovation and Technology.

In addition to her legislative duties, Rep. Lauer is the founder and owner of The Management Edge, a firm providing mediation, strategic planning and performance improvement services to area enterprises. She has also served as the Blue Springs District 1 City Councilwoman.

Rep. Lauer has served as the co-chair of Renew the Blue and the city’s Tax Increment Financing Commission. She also served on the Blue Springs Planning Commission with the Missouri Municipal League. Rep. Lauer is a graduate of Blue Springs first Police Citizens Police Academy, and has been named Blue Springs Citizen of the Year and Outstanding Civic Leader, both in 2007.

Rep. Lauer has a B.S. in Mathematics and an M.B.A.



Focus Groups and Teens
Teresa I. Costa, ME Early Childhood/Special Education, PsyD
Dr. Teresa I. Costa received her Doctorate in Clinical Psychology in 2008 specializing in the Ecosystemic Child under Dr. Kevin O’Connor, one of the founders of the Association for Play Therapy. She began working with children in 1986 in a preschool setting as she worked towards her Bachelor of Arts in Child Development. She then joined the University of Oregon campus where she completed her Masters in Early Childhood Special Education. After a number of years as a regional autism specialist she joined the civilian workforce of the United States Air Force as a Director of several Child Development Centers in Montana and California. Through the following years she gained experience with youth and adults involved in the criminal justice system, providing psychological services in a school devoted to children with special education needs and working with families helping them learn to advocate for their children’s educational rights.
She and her husband are both Veterans so helping the local Veteran population is also a passion. In November of 2015 Dr. Costa received specialized training in Cognitive Processing Therapy (CPT) from the Veterans Administration. CPT is a proven treatment for Post Traumatic Stress Disorder. She continues to  receive ongoing consultation to support her work in this area.

Teresa will be leading some of our FOCUS GROUPS as well as a session for teens. Sunday she will present a session on IEPs and 504s. Her focus group will be on understanding typical childhood behavior as opposed to behaviors that may signal a need for intervention. She is also working on a research project for AIU looking into the ties between emotional health and the need for stress dosing.

Blake Heflin

Recently graduated from CNU with an Honors B.S in Cellular, Molecular, and Physiological Biology. He is currently working his gap year while holding 2 jobs, one as part time medical scribe in an ER, and another full time CNA at a retirement community. Blake has adrenal insufficiency and is planning on becoming an endocrinologist.

Blake will be working with our teen attendees by leading focus groups and chaperoning the pizza/movie gathering on Saturday night. He’ll also serve as host for our suite where attendees can relax and recharge during breaks.

 

Focus Groups

These small sessions will be open to 10-12 individuals and will provide a chance to discuss issues around AI in a more intimate setting. Notes will be taken to help guide AIU in our work for the future. When appropriate some of the discussions (with names masked) will be shared with our group to help us all better understand the challenges and issues facing our community as well as ideas on how to resolve them. More information on the focus groups will be given to those who register for the conference.

 

THANK YOU TO OUR SPONSORS!

Pfizer Rare Disease

Rare disease includes some of the most serious of all illnesses and impacts millions of patients worldwide, representing an opportunity to apply our knowledge and expertise to help make a significant impact on addressing unmet medical needs. The Pfizer focus on rare disease builds on more than two decades of experience, a dedicated research unit focusing on rare disease, and a global portfolio of multiple medicines within a number of disease areas of focus, including hematology, neuroscience, and inherited metabolic disorders.

Pfizer Rare Disease combines pioneering science and deep understanding of how diseases work with insights from innovative strategic collaborations with academic researchers, patients, and other companies to deliver transformative treatments and solutions. We innovate every day leveraging our global footprint to accelerate the development and delivery of groundbreaking medicines and the hope of cures.

 

 

Backpack Health has created a place for individuals and families to manage and share their health information. Our innovative, multi-tier technology ecosystem enables medical foundations, health advocacy groups and drug and device developers to build and support branded communities based on the needs of their members/patients.

 

At ASAP Pharmacy we value our call to be servants.  We recognize the value of every person and promise to give them excellent and personalized care: to educate, empower and equip each one to experience a fuller quality of life beyond the prescription.

 

 

EDIE (Emergency Department Information Exchange) and PreManage are care coordination platforms offered by Collective Medical that empower care teams to improve patient outcomes by closing the communication gap that undermines quality patient care. The EDIE/PreManage platform is a nationwide network engaged with hundreds of health plans, hospitals and health systems and tens of thousands of providers. This platform can be leveraged to communicate important information about rare conditions to the emergency department, as a patient is registered and seamlessly into the provider’s workflow, to ensure that individuals with these conditions get the best possible care when they need it most.

 

The EveryLife Foundation is a science-based advocacy organization that works to bring lifesaving treatments to the 30 million Americans with rare diseases.  We focus on educating and activating the patient community to ensure they are heard by policy makers in government and by industry developing the treatments.

 

The mission of the Rare Action Network℠ (RAN) is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state based initiatives across the United States. RAN is the nation’s leading rare disease advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. The goal of RAN is to ensure that the rare disease community is represented and supported in all 50 states.

 

The Danny’s Dose Alliance is working diligently toward three main goals to protect U.S. citizens with rare disease and chronic illness for prompt and proper emergency treatments.  They are:
1. Change current treatment protocols to allow for use of a patient’s Emergency Medical Orders and to administer patient carried meds if necessary
2. Assist with paramedic and ER physician specialized education
3. Educate affected families to their role in their protection and having emergency plans

 

The Conley Cushing’s Disease Fund was established on July 17, 2014 and is a project of The Foundation for Enhancing Communities, fiscal sponsor. The funds raised will be used in part to create awareness and advocacy for patients and their loved ones who are suffering from this disease as well as support institutions and organizations focused on research and treatment surrounding Cushing’s Disease.

The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.

 

AncestryDNA can reveal the source of your greatness. Discover your ethnic origins—and get inspired by the places in your past.

 

Off Leash K9 Training – military based training methods and scent science combine to create an Adrenal Insufficiency Alert Dog program that takes months, versus years – at a fraction of the cost! Our certified trainers are here to help coach you and help you hands on throughout your Service Dog journey. We will treat you as we would want to be treated, guaranteed! Contact us for more information, and to find out if you are a candidate!

 

For over 40 years Vitalyte has been dedicated to providing consumers world-wide with an isotonic electrolyte replacement drink formulated for rapid absorption. Free from anything artificial and made with non-GMO ingredients, Vitalyte provides all the essential electrolytes plus glucose for optimal hydration. The formula is enjoyed by everyone from top-ranked professional athletes to firefighters on the front lines to those who need extra assistance achieving electrolyte balance.

 

CSRF is a 501c3 formed in 1995 to provide information and support to Cushing’s Disease and Syndrome patients, their families, and caregivers.  CSRF also strives to be an important resource for health care professionals and to increase awareness of Cushing’s in the medical community and general public.

 

The Canadian Addison Society offers support to those with both primary and secondary adrenal insufficiency.   Support groups operate in several centres across Canada providing education and the opportunity to make personal connections with others with AI.   In addition, the Society’s Community Awareness Initiative is active in the patient, medical and education communities raising awareness and advocating across Canada for improved emergency care of adrenal insufficient patients.

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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