1. Its the first day of spring. Spring is a time of rebirth, renewal and awareness.
2. It was the first day that popped into my brain. Go figure.
Since this is such a rare disorder its good to make the world aware of it in some fashion or another. That is the great thing about support groups like the one I found on Yahoo! and Facebook. Its scary. I am not going to lie. It is why I and many others have made blogs about our experience. That and it's good for our sanity. Through education, research, advocacy, and support activities perhaps one day we can understand this disease or even stop it from ever happening.
Hopefully a very special someone will one day come along and starts a nice big foundation for Amelo. Until then, its up to us to spread knowledge and awareness. Tell your friends if they ever heard of it. Ask your families if they ever knew anyone with it. Google it. Just be aware.
I just found out through Facebook that there is a campain for Febuary 28th Annual Rare Disease Day. So since there is already a campaign... so that is the new Day.
February 28th Rare Disease Day
This is from NORD
Rare Disease Day Partners
List of Partners to date
The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) and the Office of Orphan Products Development (OOPD) at the U.S. Food and Drug Administration (FDA) have signed on as Rare Disease Day Partners.
In addition, all organizations, societies, and companies working with rare diseases and/or orphan products are invited to become Rare Disease Day Partners. (For information on this, write to email@example.com). Partners are also being asked to:
* Write to their state governors requesting that February 28, 2009, be designated Rare Disease Day in their state. Click here to download a sample letter and sample resolution.
* Post the Rare Disease Day logo on their websites and in their publications.
* Make their members aware of Rare Disease Day. Sample Newsletter Story
* Encourage media coverage of Rare Disease Day by suggesting stories to their media contacts for that day or the week leading up to it. (NORD will provide a press kit soon to all partners that can be personalized and used as needed.)
* Share information about any activities their group may sponsor related to Rare Disease Day so that other organizations can benefit from reading about what they are doing.
* Share human interest stories about individuals and families affected by rare diseases to firstname.lastname@example.org, for possible posting on this website or for possible use by reporters covering Rare Disease Day.
* Nominate researchers to a Rare Disease Hall of Fame to be published on the website. This can be done by sending a brief (one page or less) summary of the what the researcher is doing, why it is important, and any results to date that have improved the lives of people with rare diseases. If possible, nominations should include a photo of the researcher.