The Power of the Purple Crayon for Cystinosis Research

Have you ever heard of the children’s book, Harold and the Purple Crayon?

It’s about a little boy who draws the things he wants to see with his purple crayon, and instantly the object appears. It’s been around since its first publication in 1955.

A little girl named Natalie also had a purple crayon. When her parents asked her what she wanted most in the world, she wrote on a napkin that she wanted her cystinosis to be cured. As a result of this wistful request, Natalie’s parents founded the Cystinosis Research Foundation (CRF).

The CRF has donated millions of dollars in the search for a cure and better treatments.

This is bigger than you think. Only 500 people in the US have cystinosis. In the past, children faced having a kidney transplant or a lifetime on dialysis because of the steady deterioration of the body’s organs, particularly the kidneys.

With funds from CRF, treatments have improved, and today Natalie is a young woman beginning her career. Because of her wish, there’s hope for a cure—and it may just be within sight. Stem cell therapy is showing more and more promise, and it is one of the avenues of research CRF is actively funding.

I have a feeling that when I finally write my masterpiece, it will start with a purple crayon.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email
Close Menu