Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and Jim is her husband. We…
According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father's Day in order to raise awareness about his three year old daughter's rare…
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States. Briana lives close to her…
She wears a lacy white dress with a long, white veil. Her beautifully shaped eyebrows arc over long-lashed eyes. Her smile, illuminated by bright red lipstick, speaks of the happiness…
In order to honor Cystinosis Awareness Day, which takes place on May 7th each year, a man will attempt to walk 57 miles in a single day in order to…
As a female Bible college student, an outside marker of pious and godly womanhood consisted of having a male significant other. While this is not strictly a religious sentimentality about…
Last week was World Kidney Day! And in fact, the whole month of March is kidney month - so there's no excuse to brush up on some key kidney facts…
As an adult living with rare disease, there have been significant gaps in my employment history. I am sure many adults with health complications experience their workforce years this way,…
The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different scholarships, one for a student that…
Happy Holidays, Patient Worthians! As we celebrate the holidays this year, we take a moment to reflect on the things that matter most deeply to us. This week, we have…
Chandler Moore, a boy with a rare disease will be getting the love and support he needs at an annual event in his home town of Georgetown, Salisbury. Chandler's Chance…
“What would I give if I could live out of these waters? What would I pay to spend a day warm on the sand? Bet'cha on land they understand Bet…
I was in fourth grade at the K-12 parochial school in a small, northern town in Wisconsin. After Kindergarten, we all were divided into two to three grades per classroom.…
I was laying on the cold, hardwood floor again after drinking phospho cysteamine(the earlier form of Cystagon, treatment for Cystinosis). My stomach was roiling and I was overheating from the…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time. People want to hear the story…
The Liv-A-Little Foundation is painting the town purple this August in the name of cystinosis awareness! Cystinosis is a genetic disorder that causes the build-up and crystallization of the amino…
I attended the 2017 CRN Family Conference in Utah this July. As someone living with rare disease who is older, (I am in my early 30’s with a disease which…
One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease. Some people run 5Ks, some people go…
Our wonderful partners at the Cystinosis Research Network (CRN) are providing the first series of live broadcasts from a Cystinosis conference! Simply make sure you're connected to the internet and…
You're happily tucking your toddler in for her afternoon nap when she starts to panic. Where's her favorite blankie and stuffed penguin? A peaceful nap won't occur without it! With…
Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…
Welcome to Friday Patient Worthians! This week we have a PW Contribution on one woman's battle with Stiff Person's Syndrome. We also have a piece on using fear to serve you in…
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,…
Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…
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