Rare Disease Day!

Wisconsin has not yet declared February 28th "Rare Disease Day", so today I emailed our governor and this is what I wrote:
Hi my name is Lisa Evans, I have spent countless days since September 16 2006 searching for answers to my son's rare disease called Opsoclonus Myoclonus Syndrome (OMS). I need you to understand that my son is my hero, the things he has had to endure for more than half of his life now is truly heartbreaking. Tonight, I became aware of "Rare Disease Day" which is recognized on Feb. 28th in about 19 states so far. Unfortunately, WI has not yet declared Feb 28th as Rare Disease Day. I feel that it is very important to be able to spread the word on rare diseases as this would truly help children be correctly diagnosed sooner making prognosis possibly more positive. My son Jymani went misdiagnosed for 3 months and by the time he was diagnosed correctly, he was in the severe stages of OMS, making treatments less effective and brain damage more likely to be irreversible. I know my email alone may not make a difference, but I am hoping I am not the only one contacting you in regards to Rare Disease Day. I am not a Rare Disease Partner, I am just a mother devoted to raising awareness and hopefully finding a cure so another child will not have to suffer like my son has. Thank you for your time.