One of the problems of having a rare disease is that awareness does not spread very quickly. It surprises and saddens me that we are coming up on 10 years into a new treatment for about 90% of patients with Neonatal Diabetes and still the estimated undiagnosed are in the thousands. Three years ago at the conference in Chicago, I remember the slides showing the numbers worldwide. Reported cases of different ND cases were just under 500. This year, the numbers were just over 500. I still find families in the Type 1 Diabetes community who don’t know about it and could possibly be tested for it. As for doctors, unless you are in the field of pediatric endocrinology, sadly, it’s unheard of.
So I’m on a mission. I want to spread awareness of this rare disease with a “new” life-altering treatment. I am back to working on my book with a passion and will begin sending out query letters to agents very soon. I am also contacting local news stations with our story in hopes of one of them picking it up soon. I think I will also try some other routes of exposure by working on some magazine articles and trying to get them published. I know that just being a blogger doesn’t make me a writer and I’m sure I need a lot of work to turn me into a true writer. But I also know that with enough passion and a loud enough voice, our story can touch the lives of families throughout the world.
If you would like to help me spread the word about this very rare but important disease, please comment, tweet, or post this on Facebook. Together, we can change lives.
Here is a link to the recap of the conference in Chicago. http://kovlerdaily.com/2013/07/celebrating-miracles-milestones-a-recap/