This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of Congress to educate legislators on the importance of continued and increased funding for various rare disease research.
We will be in Washington during a particularly politically tumultuous time as the “sequestration” is scheduled to kick in on March 1st. Sequestration refers to mandatory, across-the-board cuts affecting every aspect of government. This provision was put in place in the event the various branches of government do not agree on a formal budget. At stake are potential cuts to crucial research funding initiatives headed by the National Institutes of Health(NIH) and the Food & Drug Administration (FDA).
Our goal as activists will be to urge our legislators to implement legislation which will protect or increase funding for this needed research.
My personal goal is to create relationships with key staff members and with other patient groups to continue the conversation and keep rare disease awareness in the minds of our representatives. In addition to the Lobby Day, other activities, workshops and World Rare Disease Day events are planned in the DC area.
It should be a very interesting, educating and enlightening experience which I will describe in a daily blog next week!
Robert Ostrea is dad to Ethan (12), Abigail (8) and Hannah, who lost her battle to Neuronopathic Gaucher’s Disease at the age of 3. Robert lives with his wife Carrie and their children in Henderson, NV and is an parent advocate of childhood rare disease and special needs issues. He is the co-founder of the Little Miss Hannah Foundation, a Nevada-based nonprofit that works with families of children diagnosed with rare, life-limiting, and complex medical conditions. You can learn more about Robert and the Little Miss Hannah Foundation here at their website or on their Facebook.