Holly has a son and a daughter with Fragile X syndrome. In 2006 she founded the Central Illinois chapter of the Community Support Network group to bring families together and raise awareness about Fragile X in the region. In 2010, Holly was the program assistant and later the program coordinator for the National Fragile X Foundation LINKS program, which was renamed Community Support Network in 2014.

Holly has been a speaker at several conferences, including the NFXF’s international conferences, on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.” The last of these was made into a podcast for the NFXF.