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On top of the world.

Much of my work these days involve the color purple for my Fibromyalgia Awareness and other purple ribbon illnesses. Much of my wild ideas are based on originally thought of awareness concepts I started since 2007. Many of these ideas have been copied by MANY organizations for other conditions as well. All my online campaigns have been volunteer work for that cause. If you see an awareness idea or concept there’s a huge chance it’s one I had already created.

Unlike other’s I’m not known to show my face or real identity much. Unfortunately, this has lead to copy right rip offs and other’s benefiting, inclusive one person won an award!

I have no need for so much attention, but rather enjoy the work that I do that has helped many world-wide, not just people in the United States.

I’m pretty sure you know of my work in one or another and are unaware of its original  creator. Maybe, that will change someday, if not the ultimate goal has been made — to change lives.

What do you think?

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          • Batten disease is one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats).

            Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes:

            Seizures
            Visual impairment/blindness
            Personality and behavior changes
            Dementia
            Loss of motor skills and the ability to walk, talk and communicate
            Because of widely varying genetic mutations, the arc of Batten disease can vary tremendously for each person. Sadly, until more strides are made in research, treatments and cures, Batten results in an early death of our children and adults.

            Though recent improvements in genetic testing have made diagnosing Batten disease much quicker and more reliable, families tell of very long diagnostic journeys, often years after the first signs of seizures or loss of sight. In a recent needs assessment completed by BDSRA, more than 30 different diagnoses were reported by families before the final Batten diagnostic determination. Autism, seizure disorder, epilepsy, PDD and others are common early diagnoses.

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