Just a mamabear advocating and spreading awareness. Motivated by my daughter, driven by change
My journey is just beginning, but my mission will not be complete until treatment and/or a cure.
My daughter was born and diagnosed 8 months later with a rare disease called Jordan’s Syndrome. There are about 180 individuals worldwide diagnosed and the number is growing. It became my mission to help her beat the odds and work hard every day to get stronger.
While doing so, I too became stronger and learned that my voice, my actions, and my advocacy, can also help her and others in the rare disease world stand a fighting chance.
It all started one night when I found myself in bed, tears streaming down my face. The next thing I knew, I was writing it all down, which eventually became my blog. I started to feel a little less burderened by my fears and emotions, and a whole new world was opened up to me.
I am trying to spread awareness and raise money for Jordan’s Guardian Angels, my daughter, the challenges and struggles, the triumphs, and daily life.
My goal is to connect with others in the rare disease community, but also reach others outside of the rare disease world so they can better understand the daily struggles and fears that patients, caregivers, and community members face every day.
The more awareness that is out there, the better we can all work together for a common cause: scientific advancements, collaboration, better understanding, and inclusivity.
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“One quick thing I want to mention is a service I’ve started using called ConsoliDoc because I know some of my listeners may find it useful and I don’t want to forget. ConsoliDoc helps me collect and manage all of my medical information using one portal. Basically all you have to do is use your account to submit record requests, super easy and takes like 10 seconds each, and then they literally do the rest and now I can log into my account and access my complete medical history at any time. It's kind of game changing for me because I’ve wanted something like this for so long. Anyways, I don’t want to bore anyone but if you’re interested check them out at ConsoliDoc.com.”
The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.Support the show