Le Lézard
Classified in: Health
Subjects: CHI, PDT, DIS, DEI

Ahead of Disability Pride Month, New Children's Book and Digital Platform "Joyfully Josie" Aims to Spark Conversations Around Disabilities, Rare Diseases, and Inclusion


NEW YORK, June 7, 2023 /PRNewswire/ -- Nicole Zeitzer Johnson announced today the release of her debut book, "Joyfully Josie." Designed to help parents and families discuss inclusion in the context of disabilities, this captivating children's book series aims to foster understanding of rare diseases and the experiences of medically complex individuals.

As the co-founder of the FOXG1 Research Foundation and mother to Josie, who suffers with FOXG1 syndrome, a rare genetic neurodevelopmental disorder, Zeitzer Johnson brings her personal journey and expertise to the pages of "Joyfully Josie." Through the power of storytelling, she enlightens both parents and children, helping them feel comfortable with those who are different.

"Joyfully Josie" is a heartwarming tale that showcases Josie's unwavering spirit and her ability to spread joy to everyone she encounters, despite her many challenges.

"My goal is to help give parents the tools to introduce disabilities and inclusion to their children at a young age. Children are often afraid when they see Josie because they don't understand disabilities or medical complexities. It's intimidating. I hope "Joyfully Josie" will turn their fear into excitement to meet any child with disabilities." Zeitzer Johnson said.

"Joyfully Josie" extends beyond the pages of the book with an innovative interactive digital platform. Through this platform, children can play Josie's favorite games and become a character in Josie's playground, immersing themselves in her world and joining her mission to find a cure for FOXG1 syndrome and childhood neurological diseases. This unique blend of storytelling and interactivity creates an engaging learning experience that empowers children to make a difference.

Nicole Zeitzer Johnson's dedication to promoting awareness and finding a cure for rare diseases is exemplified by her work with the FOXG1 Research Foundation. As one of the fastest-growing rare disease patient organizations and a Chan Zuckerberg Initiative "Rare As One" partner, the foundation has made significant strides in advancing research, raising awareness, and supporting affected families. Through "Joyfully Josie," Nicole continues to champion the cause, using her platform to create positive change in the lives of countless individuals and families. All profits from book sales go directly to the FOXG1 Research Foundation.

"Joyfully Josie" is available to purchase at www.joyfullyjosie.love and on Amazon. Retailers contact [email protected] for information.

About Nicole Zeitzer Johnson:
Nicole Zeitzer Johnson is an inspirational leader who co-founded the FOXG1 Research Foundation, known for its innovative approaches in the field of rare diseases. With her personal experience as a mother to Josie, who was born with FOXG1 syndrome, a severe rare neurological disease, Nicole brings a deep understanding and passion to her work. Leveraging nearly three decades of experience in media and entrepreneurship, she leads the foundation in pioneering initiatives that aim to bring successful therapeutics, including gene therapy, to clinical trials in the near future.

In June 2023, Nicole launched "Joyfully Josie," a groundbreaking children's book series and digital platform. This project not only serves as a testament to her dedication to raising awareness about disabilities and rare diseases but also offers parents a valuable tool to teach their children about empathy, understanding, and inclusion from an early age.

About the FOXG1 Research Foundation:
The FOXG1 Research Foundation has gained recognition as one of the fastest growing and innovative global rare disease organizations. Notably, it has been honored as a Chan Zuckerberg Initiative "Rare As One" partner, reflecting the foundation's commitment to making a significant impact in the lives of individuals affected by rare diseases. Through pioneering research, advocacy, and collaborative efforts, the foundation strives to advance treatments and therapies for FOXG1 syndrome and other childhood neurological diseases including Autism. By focusing on cutting-edge solutions and fostering partnerships, the FOXG1 Research Foundation is at the forefront of driving meaningful change within the rare disease community.

www.foxg1research.org | www.joyfullyjosie.love

 

SOURCE FOXG1 Research Foundation


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