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.
Monica's mom, Heather, wrote this when the article was published:
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"