Batten Disease affects people throughout the world. It is genetic and is carried in 2/3 people. Rare disease cases are the remnents of 10 faultly genes that is in our bodies and cases 10 thousand rare diseases.
We need the government to invest in special needs families. We need the medications and supplies to take care of our families. There also needs to have disablity funding funneled into the school systems and special education training, supplies and more jobs.
Specifically Battens families need the FDA to make medications and treatment available without having to put our families through tremendous testing, costs and being told "NO." My daughter needs treatment now, not until she misses her window and can't be saved.
Please help Batten families and Rare Disease families. Thank you
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