Jaiya is a 10th grader in North Carolina. She was diagnosed at the age of 2 with Chronic Severe Neutropenia-Autoimmune. She is blessed with an extremely supportive family and community who are giving Jaiya a strong foundation to define Neutropenia on her own terms. She has certainly found her voice in raising awareness and being an advocate for the Neutropenia community.
#1: World Rare Disease Day
Each year Jaiya encourages her friends and family to participate in World Rare Disease Day by wearing denim, zebra ribbons, and this year lighting up their homes and places of business. She simply sends a text blast that includes information about her story, Neutropenia, and the national Rare Disease Day campaign. She provides people with zebra ribbon before the actual day. Everyone takes pictures of how they support the movement and posts the pictures on social media and use the hashtag #ilovesomeonerare #1inamillionJaiya. Over 100 people reposted a graphic designed for the Rare Disease Day in support of Jaiya.
In previous years, she has partnered with two schools and her cheer gym to promote this campaign. The schools set up stations around campus where students came to paint their hands and take fun pictures. She named those stations “Zebra Hubs”. Jaiya also created a short slide show about Neutropenia and the Rare Disease Day that displayed in the areas. Her cheer gym set up a rotation where athletes and coaches could participate before and after practice. Jaiya created small two-sided handouts for the participates and other people in the building. One side had details about Neutropenia and the other side had details about Rare Disease Day.
Jaiya has already began planning for Rare Disease Day 2023, with a basketball tournament in motion.
#2: Social Media Campaign
Jaiya is dedicated to promoting awareness for Neutropenia as well as connecting with other individuals with the disorder. She and her parents created two social media platforms that she uses strategically to promote awareness. They have connected with people living with Neutropenia from Ohio to South Africa. Planning meetings were held to target 8 important areas to share with social media. She has launched the following things on her social media platforms:
- The Love and Light Motivational Posts (Let’s Stay Lifted)- Posts used to motivate and encourage the rare community during the pandemic and in general.
- Jaiya’s Networking Journey (Let’s Connect to get Educated)– Highlights of Jaiya’s efforts to network with other rare community organizations. Through attending virtual conferences and webinars. (NNN, EveryLife Foundation, Global Genes)
- The Chronically Ill and the Pandemic (Let’s Stay Safe)– Post about pandemic safety measures. As well as DIY project highlights (making masks and hand sanitizers, essential oil rollers, etc)
- Neutropenia Chronicles (Let’s Share the Experience)- Post to share the experiences of Jaiya’s doctor visits and hospital stays.
- Health Tips (Let’s Stay Healthy: Mind, Body, and Soul)- Post about exercises, healthy eating habits, essential oils, mental health, and spiritual maintenance.
- HERstory, Issa A Movement (Let’s Get Involved)- Post that advertise events and service projects, planned by Jaiya and her network, to bring awareness to Neutropenia. She invites the community to participate and post information about the events after they happen.
- All About Neutropenia (Let’s Tell the World)- Post to exclusively share information about the disorder itself (e.g. Top 5 Tips- Safe at school with Neutropenia, 10 Neutropenic Precautions, What’s Up with Your Neutrophil, etc.).
- Parents of Zebra Tips: POZT (Let’s Support the Caregiver)- Post that give tips to parents/caregivers of children with rare disorders. Tips that include self-care tips, medical insurance tips, safe school tips, and more
To learn more about Jaiya’s Social Media campaign, visit the following social media links:
Instagram: jaiya4neutropenia
Facebook: Jaiya For Neutropenia Awareness
#3 Paint for Neutropenia
“Art can be a versatile form of therapy that can help all ages” is a quote that we believe in, so we decided to partner with a local artist, NKPaints, another year for a Paint for Neutropenia event. It was an event to uplift, empower, and overcome with creativity. The participants learned about Neutropenia through a presentation prepared by Jaiya. Over 55 people came to participate, and the event was advertised in the local media.
#4 Jaiya Evanni Foundation Wrapped By Jaiya Evanni November 2022
Jaiya has spent most of the year hand-knitting scarfs and blankets for her Wrapped by Jaiya Evanni project. In November she will deliver the scarfs and blankets to the hospital where she is treated for the other children and care givers that are also treated there. In order to raise funds for the materials needed for this project, Jaiya partnered with Balance Candle Bar. She created a custom candle and label to sell.
“The Jaiya Evanni Foundation, Inc is a movement that has existed, in ACTION, for years.
Since Jaiya was diagnosed with Severe Chronic Neutropenia- Autoimmune at the age of 2 the Clark family has educated themselves and in return blessed the community. We take great pride in bringing awareness to Neutropenia as well as blessing diagnosed children and their families. Our actions speak louder than any words we could ever speak but we must say to EVERY Zebra out there…
You were born to stand out!
Bloom RARE! “
