Event
Let’s Make Caregiving a Bit Easier
August 22, 2024 at 8:00 PM ET
Watch an archived recording of this event
Finding resources and organizing information are two common struggles for many parents in our Network. But great news – CPN recently discovered two tools that promise to make these tasks much easier! In this session, we feature the founders of mejo and Librarey. They demonstrate how their innovative tools can help parents quickly identify support organizations and streamline care documents for their children.
Librarey, part of Comend, is designed for the rare disease and disability community. Beyond being a search engine, it’s a collaborative space where families, caregivers, and advocates impacted by rare diseases and disabilities can find and share resources, connect with supportive communities, and create curated collections customized to their unique needs.
mejo (short for ‘me journey’) is a mobile app that provides parents and caregivers with a better way to simplify, organize and share their child’s most important medical + care information. Easy to use, mejo helps caregivers save time and gain peace of mind by organizing their child’s information into easily digestible views that can be securely shared – with teachers, caregivers, family members and clinicians – in a click.
Courageous Parents Network offered this program for education purposes and does not endorse or sponsor any product, service or activity.
Our Panel
Sierra Phillips is the Co-Founder and Chief Mom Officer at Librarey
Sierra Phillips is the Co-Founder and Chief Mom Officer at Librarey. With a strong business development background and extensive CRO industry experience, Sierra brings a wealth of scientific expertise in genetics, cancer biology, and molecular biology to her roles. As a dedicated mother of twins, Sierra has embraced multiple challenging roles, including rare mom and heart mom, driven by her deep passion for genetics. In 2021, her son was diagnosed with Warsaw Breakage Syndrome, a rare condition with fewer than 25 documented cases worldwide at the time. In response to this life-changing event, Sierra founded the Warsaw Breakage Syndrome Foundation and co-founded Librarey. She is a relentless advocate committed to building the most comprehensive, freely available disability resource database. By providing families navigating similar challenges with the best possible resources and information, she aims to empower and support them.
Ryan Sheedy is a Dad, Rare Disease Caregiver and Founder of mejo
Ryan Sheedy is a Dad, Rare Disease Caregiver and Founder. He lives in Bentonville, AR with his wife and 3 sons. In 2018, after 15+ years in Business Development and Fundraising he paused his career to become a Stay at Home Dad/Caregiver for his twin sons. One of his sons, Reynolds was diagnosed with Costello Syndrome in 2018. Since birth Ryan has been Reynolds’ primary caregiver (100+ days in the NICU, countless surgeries and managing a 25+ person care team). He and his son’s rare journey and the countless families they have met along the way inspired him to create mejo.
