Editor’s Choice: Reflecting On What Matters Most This Christmas
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’s Chance Christmas Palooza For Cystinosis on 5th Year
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…
Source: Pixabay
I Am a Blessing – Part 3 of My Cystinosis Series
“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…
Source: Pixabay
I Am a Blessing-Part Two of My Cystinosis Series
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.…
Source: Pixabay
I Am a Blessing – Part One of My Cystinosis Series
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…
Source: Pixabay
Parenting and Rare Disease: This Dad is Doing it Right
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…
Why Do Children Suffer with Rare Disease, but Adults Just Live with It?
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…
It’s Not Too Late to Support This Cystinosis Foundation!
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…
Rare is Worth it: How the Cystinosis Research Network Family Conference Renewed my Spirit
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…
Source: Pixabay
How a Grandfather’s Haircut Raised Over $4,000 for Cystinosis
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…
Don’t Miss the CRN’s Live Broadcasts Tomorrow and Saturday!
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…
Want More Smiles? Donate to This Cystinosis Toddler
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…
Editor’s Choice: Powerful Purple Crayons and Supermoms
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…
Editor’s Choice: Donating, Battling and Healing in the Face of Rare Disease
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…
https://pixabay.com/en/child-girl-blond-face-view-amazed-659283/
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,…
https://pixabay.com/en/anatomical-anatomy-body-gut-health-2261006/
If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation
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.…
Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars
Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…
https://pixabay.com/en/affection-beach-parents-child-1866868/
The 2017 Cystinosis Research Network Family Conference is Coming Soon!
The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…
Editor’s Choice: Love, Lyme, and Lou Gehrig’s
Welcome back to Editor's Choice! May is Lyme Disease Awareness Month, and to bring you awareness we have a 7-minute documentary you won't want to miss! We also have some…
https://pixabay.com/en/shoes-relax-teenager-shoes-828414/
Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood
Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…
Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval
Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…
Love in the Time of Cystinosis: How Battling a Rare Condition Lead to a Lasting Romance
It's hard enough to find love in this world. Apps, matchmaking websites, and nosy friends can do their best to lend a hand - but at the end of the…
How This Group is Leading Kids with Cystinosis to Self-Advocacy
The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…
CRF Grants Support the Quest for a Cure
The Cystinosis Research Foundation is the largest provider of grants for cystinosis research. When we say largest we don't mean in the country, we mean in the world. In fact,…
New Hope for Cystinosis in Organ Donation Crisis
If you’ve ever known someone waiting for an organ transplant, then you know what it’s like. They walk around with a beeper like a high school senior waits by the…
