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rare disease week Capitol Hill group photo 2017

Our first Rare Disease Week in DC

1 Comment / Advocacy, Awareness, Education, General, Policy / / / , , , , , , , ,

At the 2016 MLD Family Conference a conversation with Dean led to a decision to attend the Rare Disease week. It was a first visit for wife Nancy and I to Rare Disease week and a pleasure for us to assist daughter Michelle in attending this year. Last year she had planned to attend but […]

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Rare Disease Week in DC … a parent’s perspective

2 Comments / Advocacy, Compassion, Education, General / / / , , , , ,

For those of you who know me, I have been a teaching computer skills to middle school kids for 17 years!.  While I love school now as a teacher, I did not enjoy all aspects of school as a student.  My favorite classes were Science and Gym!  Social Studies, not so much!  Shhhhh….. I really

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