Mother Of Sons With Retinitis Pigmentosa Becomes Powerful Advocate For Rare Diseases

When Kristen Smedley learned her son, Michael, was diagnosed with retinitis pigmentosa, she decided she wouldn’t sit back and watch it take away from her son’s life, she would take action herself, The Intelligencer reported. It was a devastating reveal for the Smedley family, yet that wouldn’t be the end of it. Years later, their second and youngest son, Mitchell, was also diagnosed with the disease.
Retinitis pigmentosa is a hereditary disease that leads to eventual blindness. The disorder decreases the cell count in the retina, often affecting ones peripheral vision and inducing tunnel vision. Many patients later on go completely blind. The Smedley brothers are not completely without vision, but are within the legally considered blind. They use braille in their every day lives.

The Smedley family knew the disease would force their sons to become legally blind over time, but Kristen was determined to make sure they still had a high quality of life and were able to participate in everything they wanted to do. Mitchell is very grateful to have a mother like Kristen and feels she’s successfully done everything in her power to make them feel comfortable.

From Kristen’s successful advocacy, she was deemed an ambassador for a network of rare disease organizations. She will act as the main communication between NORD (National Organization of Rare Disorders) and NORD’s state networks, agencies and officials. Everything she does is in efforts to improve the quality of life those with rare diseases, as well as their families.

Kristen’s instant impact has made her a valuable asset to the continued growth of NORD and it’s branches. Kristen Angell, the associate director of membership expressed that Mrs. Smedley is a phenomenal advocate and that choosing a volunteer like her was a no-brainer. They needed someone to come in, make changes, and ultimately lead by passion and example. That’s exactly what Kristen did.

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