Tag: Volunteer

Meet Cindy Reasor Relationship to HPP: I have HPP. Both of my adult daughters and two granddaughters also have this condition. Joined: I joined the…

Meet Lucy George Relationship to HPP: I am the Patient Engagement Coordinator here at Soft Bones! Joined: I have been here since November 2023, coming…

Meet Blynda Kellner Relationship to HPP: I was diagnosed with HPP around 6 months old. Joined: I found Soft Bones, I think in 2015. I’m…

Meet Margaret Robb What is your relationship to HPP?  I am the Communications Manager and Patient/Caregiver Navigator. I create content for our social media platforms…

Meet Sue Krug Relationship to HPP: I am a patient with HPP. I have two mutations, one from each of my parents. Since the moment…

Meet Charlene W. Relationship to HPP: I have worked in the rare bone disease field for many years serving as Executive Director of The Paget’s…

Meet Judith Harris Relationship to HPP: Region Lead for Northeast. I have been diagnosed with juvenile-onset HPP. Joined: May 2019. It’ll be five years in…

Meet Nicole Belting Relationship to HPP: Region Lead for Midwest 1 Joined: March of 2023. Last summer I hosted my first Soft Bones meeting at…

Meet Denise Goodbar Relationship to HPP: Executive Director at Soft Bones Joined: March of 2015 What do you want the world to know about HPP?…