Being One In A Million

Does Not Mean You’re Alone

Zoe’s Story is a 501(c)(3) non-profit organization that helps connect children and families battling CRMO/CNO with others across the globe. We also strive to give CRMO Warriors empowerment over their condition through journaling and therapeutic writing sessions.

About Us

At the age of 13, my daughter Zoe was diagnosed with CRMO/CNO, a rare disease that strikes only one in one million people. Current research shows that the majority of people battling this illness are children between the ages of 4 and 14. Symptoms of CRMO/CNO include bone lesions, inflammation, and recurrent episodes of pain. There is currently no known cause or single cure for this condition. Treatment can range from taking an anti-inflammatory regime of medication to infusions and surgical procedures. These treatments are often specific to the patient and are based on the severity of their condition.

When Zoe was diagnosed, I quickly discovered that the rarity of this disease meant that there were few support groups for families of children battling CRMO/CNO. I was fortunate to be directed to the CRMO Facebook Page where I connected with amazing parents of CRMO Warriors across the globe. Several parents talked about the loneliness and isolation these warriors experienced because there were few who understood or could relate to what they were experiencing.

There were often “role call” posts where families sought to find the location of others. Finally, parents talked about the need to balance their children’s privacy with the need to understand how they were doing both physically and emotionally. My family and my daughter experienced all of this, and the way that Zoe dealt with her emotions was through writing. She wrote short stories and shared them with her friends. She journaled her thoughts and feelings about her illness. I began to notice that the more she wrote, the more empowered she became. Writing provided an outlet for her emotions and gave her a way to cope with what she was going through. Quite simply, it helped her to feel normal again. The desire to help families connect with one another more easily and to help children feel normal by expressing emotions about their feelings is how Zoe’s Story was born.

Tekeisha Zimmernan

Director and Co-founder

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Zoe Duncome

Co-Founder

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Mission

Our mission is to Fight Rare Disease Using the Power of the Pen. Journaling and storytelling are the tools we use to empower children against their conditions and provide them with a safe outlet to discuss and cope with their emotions.

Raising awareness and providing education allows us to equip our caregivers with the support they need for themselves and their warriors. We help children and caregivers realize that being one person in a million with a rare illness does not mean they are alone.

Vision

Our vision is to eliminate the mental stress, anxiety, isolation, and depression in children who live with rare illnesses and other special health conditions.

Contact Us

Thank you for reaching out to Zoe’s Story! Our normal operating hours are Monday – Friday from 9am- 5pm ET. Feel free to give us a call at XXX-XXX-XXXX or email us at info@zoestory.org

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