Conference Week

Jamie and Melissa attended that National Myastania Gravis Conference in St. Louis. Jamie was disappointed in it because they didn't talk about Zander's form very much because it is so rare. They focused on the autoimmune form. Zander's form only effects 1 in 1 million births.

Zander's is genetic based rather than the autoimmune form. Zander's is caused by mutations in the genes. She likened it to a child with Downs Syndrome. There were problems with the genes. They are having a hard time narrowing the genes down that have the mutations in Zander's case. They have ruled out seven possible genes that could have mutated. If I understood correctly, these are the seven worst forms. They are still trying to determine which genes are the problem.

There is so little known about the congenital form of Myastania Gravis.

Jamie walked in the fundraiser in honor of Zander.

Like any event, there are things that happen that are so funny that they must be shared. If you know my sisters, you know that Melissa and Jamie are 13 months apart in age and are like two peas in a pod. Melissa and Jamie were attending a conference dinner this week. They were talking to this mother and daughter from out of state. The mother turned to Jamie and asked "Is this your mother?" Melissa quickly piped up. "No I am not her mother. I am her sister. She is only 13 months younger than me." Needless to say the mother didn't say much during the rest of dinner and Jamie didn't let Melissa forget it. When she got home she kept calling her "Momma".