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January 02 at 12:00PM EST.
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by Amanda Horas category: Cause
My best friend Natalie Berra was diagnosed with a rare kidney disease called Primary Hyperoxaluria when we were just 5 years old. Since that day in 1995 our closest family and friends have dedicated their lives to raising money to find a cure for this rare disease. In addition to finding a cure, we also want to provide a community and resources to others who may be suffering from this illness.
With The MileSTONE Movement, we want to bring awareness of the disease to those who may be inflicted and have never realized that Primary Hyperoxaluria is what they are suffering from. We want to provide symptoms and other resources for those who need them. And we also want to simply raise awareness and expand the OHF community and support system.
It is so important to catch Primary Hyperoxaluria at a young age in order for those with the diagnoses to live long, healthy lives. So this is what the MileSTONE movement is here to do. Bring awareness into our communities and keep our children and teens healthy.
This is important to me because my best friend has been suffering from this rare disease since we were five years old. However, she has been lucky to catch the disease at such a young age. Others who are diagnosed are not so lucky. The late the disease is caught the harder it is to promise the patient's survival. I want other young people to have the chance to live long healthy lives with Primary Hyperoxaluria. In order to do this, these people must be aware.