We are creating a RARE ANGELS Tribute for our upcoming Utah Rare events on February 27th and 29th.

 

If you have a RARE ANGEL in your family or know of someone that has lost a child to a rare or undiagnosed disease, please ask them if they would be willing to share a photograph and a written summary about their RARE ANGEL.

MarcellaWe want to honor their lives and share their journey. We plan to have a balloon release during the Utah Rare events to honor all of the Rare Angels. If you want to be a part of the RARE ANGEL Tribute, please email a photo and a summary of your child to Gina Szajnuk.

Charlee Marcella Nelson passed away from Late Infantile Batten Disease on March 15, 2014. She passed away only two and a half months after turning six years old.

About the author

Gina

Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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