For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather for educational offerings. Melanie reached out to Library Director Julie Perrin who hadn’t heard of PWS and didn’t know about Rare Disease Day. The library team was immediately excited and began drafting plans for some events and programs in anticipation of National PWS Awareness Day (May 15, 2024), as well as looking towards Rare Disease Day 2025! The McDonald family purchased an additional copy of Dr. Destiny Pacha’s book “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome” and arranged to gift it to the Jaffrey Public Library in Josephine’s honor. The library staff were excited to receive it and even wore zebra stripes to welcome Josephine!
About “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome”:
Written by Destiny Pacha, ED.D., the book follows Katie, a spirited character navigating school life while living with PWS. Through Katie’s journey, readers gain insights into the challenges and triumphs of individuals with PWS, fostering empathy and understanding. “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome” underscores the importance of inclusivity and connection, reminding us all of the power of a simple greeting to initiate meaningful relationships.
If you feel inspired to purchase and donate a copy of this book to your library, school, or any other community center, click the button below.
Share this!