Wednesday, August 29, 2012


This is Sam:

Sam is three years old. He enjoys Curious George, licking salt off french fries, and playing with puppies.

Sam calls Ivy "Baby Ivy", and last time we saw him he said, "Bye Baby Ivy". It was probably the most adorable thing I've ever heard.

Sam has cystinosis, an incredibly rare genetic disorder.for which there is treatment but no cure. 

This is Sam's brand new baby brother Lars:

Yesterday Sam and Lars's parents learned that Lars has cystinosis as well. 

If you know Stephen and Ashton, than you know that they work tirelessly all day to keep Sam and now Lars comfortable. It's no easy task. I believe the Jenkins family has visited the hospital more times in the past three years than most people visit in a lifetime. They've handled it all with grace and optimism, and I know they will continue to do so, but as you can imagine they want nothing more than a cure for their boys.

Because cystinosis is so rare, there is very little funding for research. The task then falls on the families of cystinosis patients to find ways to further research efforts. Here's where you can help.
Stephen and Ashton wrote this letter announcing "Sam's Hope for a Cure", the nonprofit organization they've created. You can visit the foundation website here and click the "How to Help" tab to make a donation. As the letter states, 100% of your donation will go to the Cystinosis Research Foundation and your gift is tax deductible. 

If your looking for a charitable cause to contribute to, or even if you aren't, I would strongly recommend helping Sam's Hope for a Cure.

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