Help with Rare Disease Diagnosis
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Posts: 10
PJ Family,
For the past year, my family has been working with doctors to understand our daughter's (Maya) "balance issues". This past spring, Maya received a diagnosis of Autosomal Recessive Spinocerebellar Ataxia 7 (SCAR7) aka TPP1 Deficiency. Maya is the 8th reported case in the world. At this stage we are trying to find more people with this disease. Here is the link to my blog post with more details (http://bjames358.blogspot.com/)(bjames358.blogspot.com/). Please give it a read and like it, forward it and share it with your network. When we find more people with this diagnosis, then we will be able to get the necessary help from the pharmaceutical and research community. Thank you, Beau
For the past year, my family has been working with doctors to understand our daughter's (Maya) "balance issues". This past spring, Maya received a diagnosis of Autosomal Recessive Spinocerebellar Ataxia 7 (SCAR7) aka TPP1 Deficiency. Maya is the 8th reported case in the world. At this stage we are trying to find more people with this disease. Here is the link to my blog post with more details (http://bjames358.blogspot.com/)(bjames358.blogspot.com/). Please give it a read and like it, forward it and share it with your network. When we find more people with this diagnosis, then we will be able to get the necessary help from the pharmaceutical and research community. Thank you, Beau
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Thanks for your support.
Here is my blog with the latest
bjames358.blogspot.com/
#fightingformaya