Natalie and Gwendolyn's Rare Disease Week wrap up

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 reviewed legislation, talked through strategy, and learned additional information regarding the issues relevant to the rare disease community that were at the top of our list. By the end of the night, I felt overwhelmed and b

Spring update from GFPD Patient Ambassador, Anna Violet

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 made a lot of progress but Anna knows there is a lot more work to do. She is also working on building up her core strength so that she can get up on her hands and knees easier and for longer periods of time. Anna really lo

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Tulsa, OK 74153



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