What's Happening Now

What's Happening Now?!

Learn about some of the updates happening around our community surrounding research, important information, events, news, and more!

Learn more about Crenessity (crinecerfont)

Crenessity Webinar and Q&A

Dr. Alejandro Diaz is a pediatric endocrinologist with Nicklaus Children’s Pediatric Specialists. He provides an overview of CRENESSITY (crinecerfont) and Phase 3 clinical trial information, including considerations for children and adults living with classic congenital adrenal hyperplasia (CAH).

February 2026

CARES Monthly Updates

CARES Foundation’s Monthly Updates are typically release during or before the first week of each month, and contain important information for members of the CAH Community.

You may use the button below to access the full text.

If you have any questions about this month’s update or the contents inside, please do not hesitate to reach out to john@caresfoundation.org.

Check out Nate Morabito’s recent reporting for WCNC Charlotte & his discussion with CARES Foundation’s Executive Director, Dina Matos, surrounding Union County Public Schools’ limitations on who can give a potentially life-saving shot to students in crisis.

“Parents fear for children’s safety as UCPS refuses to let trained teachers give life-saving injections”

Published on June 26, 2025

“As Union County denies students uninterrupted access to life-saving shot, other districts empower teachers to help”

Published on June 30, 2025

Join us for this year’s 2025 Annual CARES Foundation Patient Education Conference!

We are looking forward to a weekend filled with informative speakers & helpful breakout sessions, the chance to meet & connect with other patients, parents, families, medical professionals, and more!

To learn more about this year’s event, please visit:

https://caresfoundation.org/annual-patient-education-conference/

Please share any negative/unacceptable experiences you have had at while in a crisis situation/emergency room visit concerning you/your loved one’s congenital adrenal hyperplasia (CAH).

WE NEED YOUR VOICE! We intend to compile these experiences together and share them with providers and legislatures in an effort to improve the nature of these situations going forward. Stories can be shared anonymously, and we encourage you to share as much as possible.

If you are interested in submitting your Emergency Experience with CARES, please submit your story here or reach out to dina@caresfoundation.org with any questions/for more information on how to submit your story.

CARES will be seeking participants for its 2025 Patient Advisory Summit, concurrent with the 2025 CAH Patient Education Conference in Indianapolis, Indiana. The purpose of the advisory board is for representatives from the pharmaceutical industry to listen to patient/caregiver insights on living with and managing CAH.

Participants will be compensated for their time.

If you are interested in participating in the Patient Advisory Summit, please complete the interest form by clicking here or you may also reach out to dina@caresfoundation.org with any questions/for more information.

Thank you to all who participated in our Externally-Led Patient Focused Drug Development (EL-PFDD) meeting with the FDA this past October!

Your participation gave voice to the CAH journey.

The full report can be viewed by scanning the QR Code, or by visiting: www.caresfoundation.org

Season 2 | Episode 8

Lesley and Louise: No Shame! Putting an end to the secrecy of CAH

In this gripping episode, Dina & Stephanie tackle a most important and controversial topic: putting an end to the dangerous stigma which far too many living with CAH encounter, causing adverse effects on their lives. This episode is a crusade to make a difference in the lives of so many who live in darkness and risk due to the dangerous and unnecessary shame that often exists around CAH.

Our co-hosts are joined by CARES Pioneer Award Recipient Lesley Holroyd & Associate Dean of Nursing at UVA & mom to Joey, Louise Fleming, who share their expertise regarding shame and secrecy attached to this life-threatening condition.

How can we “normalize” CAH? How can we ensure the medical professionals in every hospital are educated about CAH so as to end the spread of judgement before it begins? Do you keep your or your child’s CAH a secret?

Hear the stories, share their tears and be inspired. See what can be achieved when four brilliant, strong, and driven women share their knowledge and first-hand experience by putting their heads together to help better this amazing community.

Recent Episodes

Catch up on past episodes of CAH Pulse by visiting cahpulse.podbean.com or by scanning the QR code below!

Season 2 | Episode 7

Tim: “Go Live Your Life as Normally as Possible” But…Nothing About CAH is Normal

Season 2 | Episode 6

Dr. Su: Words of Wisdom: Clearing up the Confusion of Stress Dosing

Season 2 | Episode 5

Raelie: CAH Does Not Define THIS Ten Year Old!

Scan to view all episodes!

Please use the follow links to access links related to this press release:

Last week, the students at the Silas Wood Sixth Grade Center in South Huntington School walked to raise awareness for CAH! Please take a moment to read more about the impact they had by viewing the article by the Huntington Patch below. A huge thank you to all who participated!

In this insightful and inspiring memoir, Kaye Colello brings to light an experience few parents go through. A disorder that few discuss due to its controversial nature. Colello and her husband’s second child was to be a boy, but biologically and chromosomally, her son was really her daughter, their Faith. As parents, they then needed to make a myriad of difficult decisions to ensure the best life for their daughter, from surgery to future medications she will need for the rest of her life. Infused with reflection, honesty, and humor, Colello shares her journey so other parents may know they are not alone in this.