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.

Wednesday, June 11, 2014

Getting Our Story Out

In the past few weeks, there have been a few articles written about those with Niemann Pick Disease, Type C.

Given its status as a rare disease, there isn't much information out in the public unless families are able to get a little attention as a result of a fundraiser.

Both of these articles, as well as other information, are not related directly to one particular fundraiser.

The first article was in USA Today. Every year they have a High School Sports Most Inspirational Athlete contest, in conjunction with the Army National Guard.

One of the entrants this year was David Coppola. Although he didn't win the contest, the paper was so inspired by him, they wrote an article anyway.

The second article was written in early June about Princess Monica Taillefer. Although the article is in French, it can be easily translated using an online translator (like here).

Monica's mom, Heather, wrote this when the article was published:
It has taken us a long time to able to reach out to the media to share Monica's story, this is in this weeks local paper.

A sign from Monica : The journalist (Samuel) who wrote the article is someone Simon knows through his volunteer work. Simon asked him if he would be willing to write an article about Monica. Samuel wrote me yesterday to tell me after speaking with his Mother about his piece, his Mother informed him that his Grandparents attended Monica's Celebration of Life Ceremony. Turns out his Grandparents are friends of Simon's Grandfather and they live in Huntingdon ~ Small world, yes but I think it was a sign from Monica that Samuel was meant to share her story

She also posted these pictures of how it looked in the newspaper:

And not to be outdone, one of the NNPDF funded researchers, Dorothea Maetzel, had a paper published about "In Vitro modelling of Niemann-Pick type C Disease Using Patient-Specific Induced Pluripotent Stem Cells"


Post a Comment

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