A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, December 20, 2012

Newspapers and Magazines

Tonight I wanted to share some articles that I wrote or were written on our behalf.

The first magazine article is the story of our diagnosis.  This was published in Complex Child Magazine, an online publication, in December 2011, just a few weeks after Dan died.  This article is also in the link on the upper left side of the page, under Dan's picture.

The second magazine article was also in Complex Child Magazine.  This was published in January 2011 and I wrote it to help other families battle insurance companies to (hopefully) get the therapy and equipment that their child needs.

The third article I wrote for Complex Child Magazine was in the December 2012 edition.  This article was about our 4 month battle with NYS Medicaid.  Not only were we fighting Dan's diagnosis, we were also fighting a government who seemed to do everything it could to derail us from getting him coverage.


One of the local newspapers has a series of bloggers on all sorts of topics.  One of the bloggers is a medical student who has been writing as she completes her education in medical school and now about being matched to an intern program.  On her blog, M.D. to Be, she does a Medical Mystery Monday where she presents a disease and has her readers guess the diagnosis.  I asked her to feature Niemann-Pick Disease.  Here is the Medical Mystery post and the answer.


When I started publicizing Dan's fundraiser a few weeks before the event, I plastered it all over Facebook and emailed everyone I could think of.  One of the local mom bloggers, Mamatoga, wanted to include it on her page.  Here is her article.


About a week before Dan's fundraiser, I sent a press release to all the local newspapers.  The smallest one,  the one in the village where the event occurred, called and wanted to do a front page feature story.  I was beyond thrilled!

Below is the article from The Ballston Journal on December 7, 2012 (ironically Dan's birthday).  A subscription is required to read the article online.  I also just found out that on December 21, 2012 the newspaper ceased paper publication after over 200 years.  I am extremely honored to have had Dan's article in one of their final editions.


Post a Comment

I love hearing from my readers. Please leave a comment to let me know you stopped by. :-)