CARES Chain Challenge - $10 Donation Challenge
To help support those living with congenital adrenal hyperplasia (CAH), we are asking for your help in the form of a $10 donation as a part of CARES Foundation’s ongoing #CARESChainChallenge campaign in 2026.
Once you have made a donation, we kindly ask that you please share this link & message with at least 5 other people to continue the chain and to help make a lasting difference in the lives of patients and families across the globe!
You can donate by clicking here. Thank you for your consideration and support!
CAH Chats (webinars)
Throughout CAH Awareness Month, CARES Foundation will be hosting several different educational webinars for those living with congenital adrenal hyperplasia (CAH).
*All sessions will begin at 8:30PM(ET) via Zoom
June 10, 2026 – Treating Adrenal Insufficiency: Don’t Stress About It | Karen Lin Su, MD
June 17, 2026 – College, Career, and Confidence: Navigating Care Transitions in CAH | Louise Fleming, RN, PhD
June 24, 2026 – Closing the Emergency Care Gap for CAH | Gretchen Alger Lin, CAH Parent and EMS Advocate
*You must login to your CARES account to register
Share your Adrenal Crisis/Emergency Room Experience
If you or your child has experienced a recent adrenal crisis or emergency room visit, please share your story.
Specifically:
- Whether a stress dose injection (e.g., Solu-Cortef) was given at home
- Your experience with EMS providers (e.g., ambulance/first responders)
- How the emergency room staff responded and treated the situation
Your feedback can help us identify areas for improvement in education, response times, support for families managing adrenal insufficiency, and can help raise awareness among healthcare providers and the broader community.
Stories can be shared by visiting this link. You may also contact Dina@caresfoundation.org.
Stories may be shared anonymously if you prefer.
Catch up on all of our podcast episodes so far!
CAH Pulse takes us on a journey to educate and bring attention to the challenges and triumphs of individuals living with Congenital Adrenal Hyperplasia (CAH). Throughout CAH Awareness Month, listen to patients, family members, medical professionals, researchers and caregivers share their stories, experiences and advice living with this challenging condition. Our hope is to further connect and champion this incredible community.
Education
Important Links & Resources
- Do All Patients with Congenital Adrenal Hyperplasia Need to Be on Hydrocortisone Three Times a Day in Order to Have Normal Growth?
- Lauren A Logan (1), Todd D Nebesio (1), George J Eckert (2), Erica A Eugster (1)
- Optimizing the Timing of Highest Hydrocortisone Dose in Children and Adolescents With 21-Hydroxylase Deficiency
- Mariska A M Schröder, (1,2) Antonius E van Herwaarden, (2) Paul N Span, (3) Erica L T van den Akker, (4) Gianni Bocca, (5)
Sabine E Hannema, (6,7) Hetty J van der Kamp, (8). Sandra W K de Kort, (9) Christiaan F Mooij, (10) Dina A Schott, (11)
Saartje Straetemans, (12) Vera van Tellingen, (13) Janiëlle A van der Velden, (1) Fred CG J Sweep, (2) and
Hedi L Claahsen-van der Grinten (1)
- Mariska A M Schröder, (1,2) Antonius E van Herwaarden, (2) Paul N Span, (3) Erica L T van den Akker, (4) Gianni Bocca, (5)
- Twice Daily Compared to Three Times Daily Hydrocortisone in Prepubertal Children with Congenital Adrenal Hyperplasia
- Jennifer Apsan (1), Charlene Thomas (2), Hailan Elnaas (1), Karen Lin-Su (1), Oksana Lekarev (1)
- Management of the Female With Non-classical Congenital Adrenal Hyperplasia (NCCАН): А Patient-Oriented Approach
- Sarantis Livadas (1)*, and Christina Bothou (2)
- Infertility and Reproductive Function in CrossMark Patients with Congenital Adrenal Hyperplasia – Pathophysiology, Advances in Management, and Recent Outcomes
- Oksana Lekarev, Do, Karen Lin-Su, MD, Maria G. Vogiatzi, MDb,*
- Experiences and preferences of women with CAH and parents about disclosure of childhood surgery
- Ashley W. Johnston (a), Mimi S. Kim (b) , Paul Kokorowski (c), Devon J. Hensel (d), Patrice M. Yasuda (e), Richard C. Rink (a), Konrad M. Szymanski (a),*, on behalf of Life with Congenital Adrenal
Hyperplasia(1)
- Ashley W. Johnston (a), Mimi S. Kim (b) , Paul Kokorowski (c), Devon J. Hensel (d), Patrice M. Yasuda (e), Richard C. Rink (a), Konrad M. Szymanski (a),*, on behalf of Life with Congenital Adrenal
- Patient and parent perspectives on testicular adrenal rest tumors in congenital adrenal hyperplasia
- Todd D. Nebesio (a), Mimi S. Kim (b), Konrad M. Szymanski (c), Paul J. Kokorowski (d), Mitchell E. Geffner (b), Erica
A. Eugster (a) on behalf of the Life with Congenital Adrenal Hyperplasia Study Group
- Todd D. Nebesio (a), Mimi S. Kim (b), Konrad M. Szymanski (c), Paul J. Kokorowski (d), Mitchell E. Geffner (b), Erica
- What do patients and parents say about parents’ ability to choose early genital surgery for girls with CAH?
- Konrad M. Szymanski,(1) MD MPH, Luis H. Braga, (2) MD PhD, Benjamin Whittam, (1) MD MS, Paul Kokorowski, (3) MD MPH, Brian D. Leland, (4) MD, on behalf of the Life with Congenital Adrenal Hyperplasia Study Group
- Growing up with clitoromegaly: experiences of North American women with congenital adrenal hyperplasia
- Konrad M. Szymanski, (1) MD MPH, Paul Kokorowski, (2) MD MPH, Luis H. Braga, (3) MD PhD, Heather Frady, (1) RN, BSN, Benjamin Whittam (1) MD MS, Devon J. Hensel, (4) MS PhD, on behalf of Life with Congenital Adrenal Hyperplasia Study Group, on behalf of the Life with Congenital Adrenal Hyperplasia Study Group
- Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex
- Konrad M. Szymanski (1), MD MPH, Richard C. Rink (1), MD, Benjamin Whittam, MD MS (1), Devon
J. Hensel (2), MS PhD FASHM, on behalf of Life with Congenital Adrenal Hyperplasia Study
Group
- Konrad M. Szymanski (1), MD MPH, Richard C. Rink (1), MD, Benjamin Whittam, MD MS (1), Devon
BE PREPARED IN AN EMERGENCY
SIGNS OF ADRENAL CRISIS | Learn about what an adrenal crisis looks like
Acute adrenal crisis is a life-threatening condition that occurs when there is not enough cortisol. This is a hormone produced by the adrenal glands.
Causes
Causes
The adrenal glands are located just above the kidneys. The adrenal gland consists of two parts. The outer portion, called the cortex, produces cortisol. This is an important hormone for controlling blood pressure. The inner portion, called the medulla, produces the hormone adrenaline (also called epinephrine). Both cortisol and adrenaline are released in response to stress.
Cortisol production is regulated by the pituitary. This is a small gland just underneath under the brain. The pituitary releases adrenocorticotropic hormone (ACTH). This is a hormone that causes the adrenal glands to release cortisol.
Adrenaline production is regulated by nerves coming from the brain and spinal cord and by circulating hormones.
People who do not have adrenal insufficiencies naturally produce up to ten times the normal amount of cortisol, which is vital to the maintenance of blood pressure and heart muscle tone, as well as sugar and salt balance, during times of physical stress. When illness or injury occurs in adrenally insufficient individuals, however, an immediate additional dose of glucocorticoids (hydrocortisone) is necessary to avert adrenal crisis. Delay in administration of these medications can lead to shock, heart failure and death.
Signs of adrenal crisis, which are not readily identifiable, include:
Signs of adrenal crisis, which are not readily identifiable, include:
- Pallor
- Dizziness
- Headache Weakness/lethargy
- Abdominal pain
- Vomiting/nausea
- Hypoglycemia
- Hypotension
- Shock Heart failure
To learn more, and find a variety of resources to help you stay better prepared in the event of adrenal crisis, please visit https://caresfoundation.org/be-prepared-in-an-emergency/.
VISIT YOUR LOCAL FIREHOUSE/EMS SERVICE
TO BE PREPARED FOR AN EMERGENCY, YOU MUST MAKE SURE YOUR LOCAL FIREHOUSE AND/OR EMS STATION IS AWARE OF YOUR OR YOUR CHILD’S ADRENAL INSUFFICIENCY/CAH STATUS! WE URGE YOU TO VISIT YOUR FIREHOUSE/EMS STATION RIGHT AWAY! Develop an individualized plan in the event of an adrenal crisis.
Ask your EMS provider to flag your address in the 911 system so that emergency personnel are aware of your adrenal insufficiency statues.
Ask your EMS provider if your state has an identification system for those with special medical needs. These programs alert EMS providers of emergency treatment needed for those with a medical condition. These programs can include:
Premise Alert Notification SMART 911 (Ask your EMS provider if your state has an identification system for those with special medical needs. These programs alert EMS providers of emergency treatment needed for those with a medical condition. These programs can include:
- SNAP (Special Needs Alert Program)
- STARS (Special Needs Tracking and Awareness Response System) see American Academy of Pediatrics article abstract about STARS
- Yellow Dot
For a successful EMS provider visit, print a copy and bring with you:
- EMS Provider Visit Tip Sheet
- Emergency Instructions Brochure
- Medication Safety Alert (EMS Protocols for Adrenal Crisis)
- Medication Safety Alert Letter
EMS ORGANIZATIONS AND PROVIDERS: BE SURE to access the documents linked above for VITAL INFORMATION to help you better serve your communities.
WEAR/CARRY MEDICAL I.D. | Why it's important & what is should say
All leading practitioners recommend that you always wear a medical ID.
In an accident or medical emergency like adrenal crisis, your medical ID will immediately alert emergency personnel to your condition. First responders are trained to look for a medical ID and they will ensure you get the correct treatment as quickly as possible.
If you are living with adrenal insufficiency, a medical ID could save your life.
What type of I.D.?
What type of I.D.?
- All people who are Adrenal Insufficient/Steroid Dependent should wear Medical Identification that says: Adrenal Insufficient/Steroid Dependent, Administer Solu-Cortef® (with appropriate dosage), AND date of birth. You can also consider listing the specific diagnosis “congenital adrenal hyperplasia” or health status “cortisone dependent” or even “treat with hydrocortisone.”
- If you have any questions as to what information you should put on your or your child’s medical alert identification, CARES Foundation encourages you to discuss this with your endocrinologist. At a minimum, however, “adrenal insufficiency” should be on the identification and it should come first.
- CARES Foundation offers a practical medical I.D. for kids and those who lead a more active lifestyle. See our Medical I.D./Shoe Tags/Luggage Tags in the CARES Shop on our website.
- MedicAlert Foundation is a highly recognized service and I.D. shop. Memberships come with a 24/7 Emergency Response Team with access to members’ health records and the team is trained to provide critical information to first responders.
Print & download wallet-sized medical I.D. cards with you on a daily basis
We recommend that you always have a Medical I.D. with you at all times in the event of adrenal crisis. Please visit https://caresfoundation.org/be-prepared-in-an-emergency/ to download our printable medical I.D. cards to place in your wallets for every day use.
CONTACT
2414 Morris Avenue, Ste 110
Union, NJ 07083
Phone: (908) 364-0272
Toll Free: (866) 227-3737
Fax: (908) 686-2019
contact@caresfoundation.org
