RARE MAMAS RISING- EPISODE 012

The Passion Behind, Behind the Mystery with Co-Creator & Rare Mom Carri Levy & Writer/Producer Brittany Cocilova

Carri Levy had been chasing a diagnosis for her daughter Ilana for years when she found The National Organization for Rare Disorders (NORD) and learned over 7,000 rare diseases exist. Carri's colleague Molly Mager's life was also impacted by a rare disease when her twin brother was diagnosed with Acinar Cell Cystadenoma, a rare pancreatic tumor. On a quest to find a diagnosis for Ilana and bring more awareness to rare diseases, Carri and Molly pitched an idea for a short series on rare and genetic diseases. What started as a six-part series has turned into a recurring segment airing on Lifetime TV's morning show The Balancing Act. Brittany Cocilova joined the show as the writer/producer/director for the series. Her own personal health struggles have enabled her to relate to patients to help them tell their captivating and emotional stories. With over 100 segments to date, Behind the Mystery has been a lighthouse for rare patients and their families, helping them get a diagnosis or learn more about their disease, find specialists, tertiary centers, clinical trials, organizations, community, and more. In this episode of Rare Mamas Rising, Carri and Brittany share their inspiring personal stories, their dedication to making the show, and why they decided to dedicate the 2022 Behind the Mystery Rare Disease Day Special to rare moms. Take a listen and hear the passion behind, Behind the Mystery.

EPISODE HIGHLIGHTS

• Carri's story navigating an undiagnosed illness for her daughter Ilana until eventually receiving the diagnoses of primary immune deficiency disease, dysautonomia, and postural orthostatic tachycardia syndrome (POTS)

• Carri's continual pursuit of a diagnosis for Ilana's unanswered symptoms
• Ilana's book Surviving and Thriving with an Invisible Chronic Illness
• Brittany's health struggles including undergoing two kidney transplants
• The purpose Brittany's found working on the show
• The meaningful reason for creating Behind the Mystery and goals for the show's future

• The powerful connections that have been made for rare patients as a result of the show
• Collaborations with partners and organizations and their investment into improving the lives of rare patients
• Ways patients and caregivers can help spread rare awareness
• Advice and learnings for patients and parents navigating a rare disease diagnosis
• Highlights from The 2022 Rare Disease Day Special featuring Tracy Dixon Salazar, Caroline Cheung-Yiu, Nikki McIntosh, and The National Organization for Rare Disorders (NORD

LINKS & RESOURCES MENTIONED

Behind the Mystery

TheBalancingAct.com/rare

https://www.instagram.com/behind_the_mystery

https://twitter.com/btmcaresforrare

https://www.linkedin.com/company/behind-the-mystery/

The Balancing Act

https://www.instagram.com/balancingacttv/

https://twitter.com/BalancingActTV

https://www.facebook.com/TheBalancingActFans

Carri Levy

https://www.linkedin.com/in/carrilevy/

Brittany Cocilova

https://www.linkedin.com/in/brittany-cocilova-10503b66/

National Organization for Rare Disorders (NORD)

https://www.rarediseases.org

Surviving & Thriving With An Invisible Chronic Illness

https://www.amazon.com/Surviving-Thriving-Invisible-Chronic-Illness/dp/1626255997/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1644247747&sr=8-1

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]