Atlanta Trip Part 1:ASBMR 2016 Advocacy with Soft Bones

Atlanta Trip Part 1: ASBMR 2016 Advocacy with Soft Bones

     This past weekend my daughter Rebekah and I had the honor of traveling to the great city of Atlanta for the American Society of Bone and Mineral Research (ASBMR) conference and to visit our dear friends the Gregory family. During our visit we met with several people from Soft Bones, the Patient Advocacy Group for Hypophosphatasia (HPP).

Mother/Daughter selfie on the plane to Atlanta!

Outside the venue for the ASBMR conference.

    During our time at ASBMR we had the opportunity to hang out and chat with other patients, doctors, and researchers. Everyone was so caring and kind. Soft Bones, our patient advocacy group, really pulls together to get things accomplished and spread the word about HPP.

A quick "family pic" at the conference.

    While we were there I got to meet the president of Soft Bones, Deborah Fowler, whom I had befriended through the HPP community on social media several years ago. This happened to be the first time we met in person and I can't express to you the joy in connecting with her. It was also a joy to connect with the wonderful Soft Bones community of patients and caregivers that have such strong hearts despite their soft bones! It was truly incredible!

                                  It was amazing to finally meet in person "the" Sue Krug from Soft Bones.

     One of the main assignments of this weekend was to help support Soft Bones by talking with doctors and researchers at the Soft Bones booth. During this time of visiting and participating in staffing the booth I was able to meet and talk with some of the doctors and researchers that helped to develop Strensiq. Strensiq is the first treatment to ever be approved by the FDA for perinatal onset, infantile onset, and juvenile onset HPP. It's amazing to see the positive progress in the patients that are on the medication and see the hope in their eyes! 

Got to see the picture of my husband Dave at the booth!

     Soft Bones released a new tool that we were able to promote in the booth to show a difference between a toddler with HPP and a toddler without HPP as well as the difference between an adult with HPP and an adult without HPP. It’s an amazing tool and I loved seeing people’s  faces as they saw the differences in the 3D model. You can check out information about Soft Bones, Hypophosphatasia, and play with the new tool on the SoftBones website.

HPP toddler interactive tool available on the SoftBones website.

     

      After returning home from the conference, I realized this weekend helped to fulfill a promise that I made to my husband 26 years ago when he had his first symptoms of HPP during our marriage. I told him that someone, somewhere, knew something and that I was going to do whatever I could to find them and to find something that would help him. This weekend was the end and the beginning of that adventure..... 

Check back on Monday for part two!

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