February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month old daughter who has PBD/ZSD and she was my travel buddy for Rare Disease Week 2020.
Rare Disease Week 2020 was an amazing experience. It gave me the opportunity to bond with other GFPD families—it’s difficult not to bond when you have 11 people in one AirBNB (nothing like a shower schedule to bring everyone together😊). On our first night in DC, our GFPD family prepared for battle. We revie
Anna Violet says "Happy Spring Time" to all of her PBD family! Anna Violet has a lot of things going on and is making some serious strides! Every week she gets visits from some of her favorite therapists. She has physical therapy on Mondays, occupational therapy on Fridays and now that Anna has passed her swallow study she gets to include speech therapy as well.
In physical therapy, Anna Violet really gets to flex her muscles as she works on sitting unsupported. She has mad