CAH PULSE
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). Each month 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. *This podcast was recorded under a SAG-AFTRA Collective Bargaining Agreement*
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Episodes
Friday Dec 08, 2023
Friday Dec 08, 2023
When Lesley's mom was unable to care for her, she was given up to the courts of England. Join Stephanie and Dina as Lesley shares her lowest of lows, love and loss, misinformation and surgeries she was never told why she had. Living most of her life unknowingly with CAH, Lesley’s is a story of survival, victory, resilience, giving back and feeling lucky.
Monday Nov 13, 2023
Monday Nov 13, 2023
Connecting with someone who knows your fears and challenges is a crusade Dina Matos, Executive Director of Cares Foundation and Stephanie Erb, long time career actress, advocate and mom of a grown child with Congenital Adrenal Hyperplasia have been on together. They bring us this compelling first episode of CAH Pulse, a podcast born and bred to educate, connect and give hope to those living with this challenging rare condition. Here Stephanie tells her shocking story of adopting a child at birth with CAH, a rare genetic disease, and becoming a strong advocate for others with the condition and Dina who explains after hearing a parent ask "how long is my child going to live?" one too many times, exactly why she has such heartfelt dedication to helping those living with CAH. After hearing Dina and Stephanie's introduction, you will be left with a world of hope for these patients as well as the message that a CAH child can indeed live a full, typical and beautiful life. Join Dina and Stephanie on their first of many conversations to illuminate the value of this incredible CAH village and how there is always room for more to come along for the ride.
CARES Foundation
Making a difference in the lives of those with Congenital Adrenal Hyperplasia
CARES Foundation leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.
The Foundation connects and supports families and individuals with Congenital Adrenal Hyperplasia (CAH), an orphan condition that is historically under served, supported and funded. We also strive to increase the awareness of CAH within the healthcare community.
For more information please visit www.caresfoundation.org