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Tag: Volunteer

Meet Alex Lupo

Meet Alex Lupo Relationship to HPP: Before joining Soft Bones, I had never heard of it or met anyone with hypophosphatasia (HPP). Now that I am part…

Margaret Robb November 10, 2024
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Meet Cindy Reasor

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…

Margaret Robb October 14, 2024
0 Comments

Meet Lucy George

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…

Margaret Robb September 16, 2024
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Meet Blynda Kellner

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…

Margaret Robb August 12, 2024
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Meet Margaret Robb

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…

Margaret Robb July 15, 2024
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Meet Sue Krug

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…

Margaret Robb June 17, 2024
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Meet Judith Harris

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…

Margaret Robb April 15, 2024
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Meet Nicole Belting

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…

Margaret Robb March 7, 2024
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Meet Denise Goodbar

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?…

Margaret Robb February 12, 2024
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