Today was World RARE Disease Day and I spent my day at the Capitol with other RARE Disease advocates.  It was great to speak with others who have a similar vision.  However, while there I realized that our kids deserve so much more.

We get to organize at the local level to create a model that works.  Our voices will be heard through panel presentations with community leaders and local representatives to discuss and answer questions about issues that are important and relevant to us. We need to communicate already existing programming in a more effective and streamlined way.

We are stronger together than we are apart. RARE Disease advocacy groups need to pool their resources and create a force to be reckoned with.  Today, we heard from the Executive Director of an organization called the Myelin Project.  He spoke about how his organization on its own was unsuccessful in getting a representative to vote on a particular bill for over six months.  Last week they joined forces with similar organizations and set up phone banking efforts that filled the representative voicemail.  The next day she cast her vote in favor of the bill.

When we come together we can create amazing results.


Mrs. Griess

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