Dear Lisa and Carey,
I'm so glad you've kept this site up and running. I think of y'all often, but have been struggling, since October of 2012 with viruses, infections and flares. I've been in and out of the hospital and physical therapy rehab and it gets harder and harder to "bounce back" when hit with so much in a short span of time, which you know all too well.
The letter from your friend is really poignant . She might consider submitting it to her local paper. If it is too late this year, next year the message will still be relative, both for bullying and awareness of rare diseases.
Somehow, I haven't managed to keep up with Rare Disease Day and it is an opportunity to help foster awareness. Collin was a good ambassador for NMO. None of us want to be ill, but when disease strikes, we have no option but to deal with it. How we choose to deal with our circumstances, no matter what they are, is our choice and that choice is what either inspires others or drives others away. Collin was an inspiration. He fought so hard and always gave his best. He inspired so many people and his legacy lives on!
Collin has been on my mind and I smiled a BIG smile when Jimmy Johnson was the big winner! Maybe you could request Jimmy Johnson to wear a green jumpsuit, with a RDD logo, for one race per year? I'm sure he has met others with rare diseases and he knew he was Collin's favorite when Collin met him. Attach the pic of Collin and his hero to your email or snail mail request. Wouldn't that be wonderful press coverage when reporters ask about the green jumpsuit, with him advocating for rare diseases?
Are there any others of you, reading the posts on this site, and/or know or live with a Rare Disease friend, family member or face a Rare Disease yourself, who might help advocate for Rare Disease Day? If you have met a celebrity or well known person, please consider asking them to wear green, thus bringing awareness to this cause!
Is there already a logo and/or a place to plug in - like a website, for Rare Disease Day? If someone knows about this, please give the info to Lisa and Carey and they can let all of us know.
One of Collin's Froggies,