Category Archives: Blog
Happy First Day of Summer!!
Happy first day of summer! Due to Covid-19, we haven’t been able to do a...
Jun
Building our Little Room – Follow up from “Discovering Our Connections- GFPD Virtual Meetup”
Recently I attended the Discovering Our Connections Virtual Family Meetup hosted by the GFPD. I...
Jun
History of peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD) Terminology
The GFPD was founded in 2010 to fill an unmet need to...
May
Honoring Our Bereaved Mothers
Alone and in the darkness, often feeling so incredibly hopeless: this was the reality of...
May
GFPD “Sensing Connections” Grief Support Group | Remembrance & Support
Alone. In the darkness, often feeling so incredibly hopeless. This was my reality of my...
Apr
Natalie and Gwendolyn's Rare Disease Week wrap up
February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month...
Mar
Spring update from GFPD Patient Ambassador, Anna Violet
Anna Violet says “Happy Spring Time” to all of her PBD family! Anna Violet has...
Mar
Anna Violet’s journey to a peroxisomal disorder diagnosis | GFPD 2020 Patient Ambassador
Our family’s journey to receiving Anna Violet’s diagnosis took approximately three months, but time moves...
Feb
Types of peroxisomal disorders: peroxisomal biogenesis disorders and single enzyme protein deficienc
Most peroxisomal disorders are rare, genetic (autosomal recessive) conditions that are often terminal and affect...
Feb