Sunday, February 28, 2016

UPDATED: Rare Disease Day + New Project Announcement!!

I've posted about Rare Disease Day before on this blog. I believe that it is an important day to be recognized so that we can spread awareness about rare diseases in the world. People are effected by them. Spreading awareness could always help so if you read this post any shares would be greatly appreciated.

This year I got in touch with Cameron Von St. James to partner up on my Rare Disease Day post. Cameron's wife is a survivor of a rare cancer called Mesothelioma. This type of cancer is caused by exposure to asbesto s fibers. Asbestos has been known to cause cancer for many years, but there is still no ban on it in many countries. Unfortunately, most diagnosed with Mesothelioma are only given a few months or years to live. As you know, I have a condition called Nephropathic Cystinosis (click on the link for more information.) There is also information in the below graphic. We decided to merge our missions and share some graphics that have more information on rare diseases as we both feel it is an important thing to spread awareness about. I also have a video from NORD (National Organization for Rare Diseases) in this post. At this end of this, after this information, I'm going to be making an announcement about a new project that I'm working on because I believe that it pertains to this.

Don't forget, to show your support for Rare Disease Day (the last day of February) wear denim!!

                                                                                                           Credit: Mesothelioma Cancer Alliance


Please also check out this page on's website!! Few months or years to live  << CLICK HERE <3 <3 


I'm taking part in a new project that I hope I will be able to share with you all in the not too far off future. I partnered up with a mom of a young girl with Cystinosis to put together a collection of mini memoirs from people in the Cystinosis community. People with Cystinosis and caregivers alike. We want them to be able to share their stories and hopefully give people some hope. Even people who are not directly effected by Cystinosis. In addition, all of the proceeds from the book will be going to Cystinosis research. So be on the lookout for that project!! Hopefully there will be a cover to reveal to you not too long from now!! 


Check out NORD's site and learn some more about rare diseases. You may even know someone effected by a rare disease and just not know it. Since these diseases are rare, there isn't lot of awareness about them. So if you could share this post and help us spread that awareness that would be wonderful!! Don't forget to wear that denim!! 

Please consider donating to Cystinosis Research and to Mesothelioma research

Thank you!! 

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