What a devastating loss for the Marfan community. Because of this one man, we know how to manage Marfan Syndrome, what to look for, and that those affected with the syndrome can still have full lives.
He diagnosed B when he was a child and he taught G's doctor everything he knows so we are actually feeling the loss pretty personally. The memorial service is Saturday August 2. Maybe we will go. Its only an hour away. Maybe we will go to honor what he has done for the Marfan community and to thank him for his work....his work that will never be forgotten by all those with Marfan.
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