One of the highlights of the weekend was when Deborah Fowler, President of Soft Bones, did her first Facebook live video. It was at the Soft Bones booth where we were passing out and demonstrating information about Hypophosphatasia (HPP.) We had our big screen TV connected to the SoftBones.org interactive tool to display a toddler with HPP and a toddler without HPP to exhibit the vital differences between the two. They also displayed an adult with HPP and one without through the interactive tool. At the booth we offered HPP Hippos (which are very popular), skeleton key Soft Bones USB drives with HPP information on them, HPP bones pens, packets of information, as well as the Soft Bones grant application for research. Here is the link to the video if you would like to watch it: First Soft Bones Facebook Live with Deborah Fowler.
Our family's personal Soft Bones HPP Hippo!
His name is Tibby named after the tibia bone.
His name is Tibby named after the tibia bone.
The second video was with Alexion at their booth with information about Hypophosphatasia as well as the other side about their drug Strensiq. Strensiq is the first FDA approved drug for perinatal onset, infantile onset, and juvenile onset HPP, which is very exciting for all of us. You can find the video at this link: ASBMR 2016 Alexion Booth Facebook Live with Deborah Fowler.
Dave, the love of my life that inspired me to pray,
believe,search and hope for a treatment for HPP for all affected by it.
believe,search and hope for a treatment for HPP for all affected by it.
Saturday evening was a wonderful dinner as we gathered around the table with different stories, experiences, and passions that had brought us together through Soft Bones. It was a joy to get to meet and celebrate the journey we have all been on to discover a treatment and some day I pray that together we can find a cure for Hypophsophatasia (HPP). My daughter Rebekah and I were so honored to be there.
Rebekah and I at the food court getting Chick fil A.
There were touching moments meeting doctors and researchers earlier that day and sharing our thanks with them for all they have done to create a treatment that we were told would never exist in my husbands lifetime! I wept as I thanked them and one wept as he asked me about my husband. He asked me when was he diagnosed? How was he doing? These people I had just met had such care and compassion, and the connection I felt with them was instant, precious, and amazing. These were some of the people I had spent my whole life looking for and so many of them were meeting us all in the same weekend. It was absolutely incredible and overwhelming!
One scripture I had been thinking about was James 5:16b "The prayer of a righteous person is powerful and effective." I already had been thinking about that scripture in relationship to this trip because so many things we have prayed for such as Soft Bones, HPP patients, and for a treatment for Hypophosphatasia have been answered. I cried many tears of joy as we met, hugged, and joined with people that years ago I promised my husband I would find.
Sharon
There were touching moments meeting doctors and researchers earlier that day and sharing our thanks with them for all they have done to create a treatment that we were told would never exist in my husbands lifetime! I wept as I thanked them and one wept as he asked me about my husband. He asked me when was he diagnosed? How was he doing? These people I had just met had such care and compassion, and the connection I felt with them was instant, precious, and amazing. These were some of the people I had spent my whole life looking for and so many of them were meeting us all in the same weekend. It was absolutely incredible and overwhelming!
One scripture I had been thinking about was James 5:16b "The prayer of a righteous person is powerful and effective." I already had been thinking about that scripture in relationship to this trip because so many things we have prayed for such as Soft Bones, HPP patients, and for a treatment for Hypophosphatasia have been answered. I cried many tears of joy as we met, hugged, and joined with people that years ago I promised my husband I would find.
Rebekah was known as the Starbucks Fairy.
Several years ago I searched the internet for HPP to find a website in Canada and a Yahoo group that people who had HPP from around the world were participating in. I had the privilege to meet Debbie Taillefer from Atlanta who helped to start the Yahoo group and who connected me with Deborah Fowler the founder of Soft Bones. The rest, of course, is history. So many answers to prayers, so many moments of tears and joy, and so much more work to do. I am looking forward to the next chapter in this amazing journey with Hypophosphatasia.
Several years ago I searched the internet for HPP to find a website in Canada and a Yahoo group that people who had HPP from around the world were participating in. I had the privilege to meet Debbie Taillefer from Atlanta who helped to start the Yahoo group and who connected me with Deborah Fowler the founder of Soft Bones. The rest, of course, is history. So many answers to prayers, so many moments of tears and joy, and so much more work to do. I am looking forward to the next chapter in this amazing journey with Hypophosphatasia.
Sharon
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