Sharon My Life: #RareDiseases

Showing posts with label #RareDiseases. Show all posts

Monday, October 3, 2016

Atlanta Part 3 Gregory Family, Linked Up Church, and Doing Life together

At the end to our trip to Atlanta we connected with our family, the Gregory's, to do life with them and attend the church they Pastor, Linked Up Church. Our paths connected many years ago in Oklahoma and we thank God every day for giving us such a precious relationship with the Gregory's! To be with them following the ASBMR conference with Soft Bones to share what is happening in our lives as well as the latest news on my husbands bone disorder Hypophosphatasia was a wonderful experience for my daughter and I. The last few years I have not been able to travel far from home due in part to my husband having HPP and his health being impacted by it, so getting to see the Gregory's was truly a dream come true!

Trish with one of her babies Rebekah <3

Being able to attend church the morning after ASBMR twice in one day and experience the presence, power, and love of God in Linked Up Church was such a peaceful and strengthening time for me. The praise and worship was powerful and I absolutely loved every minute of it! The message delivered by Pastors Joel and Patricia Gregory was a special one as they encouraged all of us in the basics of the faith while they began their 40-connect campaign with the church family. One scripture they shared which powerfully impacted me was James 5:16b "The prayer of a righteous person is powerful and effective." I had already been thinking upon this scripture in relationship to my daughter and I's trip as so many things we have prayed for Soft Bones, HPP patients, Hypophosphatasia, Linked Up Church, as well as the precious Gregory family have been answered. Our Father God has truly been a wonderful father to us all!

So grateful to spend time with Trish and the family!

The time we spent with Trish and Joel was invaluable as they listened to us share about the conference. The Gregory's have been a vital part of prayer for a treatment for HPP for many years and celebrated the great news of breakthrough on the front with the FDA approval of Strensiq™ for Hypophosphatasia. They encouraged us to continue sharing about our journey which gave me another nudge to return to writing this blog and for that I can't thank them enough!
I felt like being with the Gregory's and spending quiet time processing the weekend and the journey God has sent us on with HPP was extremely valuable to planning our families future. The love and care from the Gregory's and Linked Up Church was so tangible it was a precious time of fellowship and rest for myself and my daughter. We can't thank you all enough for all the love you showed us!

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Monday, September 26, 2016

Atlanta Trip Part 2: ASBMR 2016 Advocacy with Soft Bones

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.

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.

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.

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.

Sharon

Read Part 1: Atlanta Trip Part 1: ASBMR 2016 Advocacy with Soft Bones

Saturday, September 24, 2016

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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