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!

     

Dreams Do Come True and Miracles Happen!

     Over 20 years ago an endocrinologist told my husband and I you will never see a drug for the disease you have called Hypophosphatasia in your lifetime. Well we understood the Dr and what she told us was true based upon facts at the time but we chose to leave that office and pray for a miracle. We were asking that the impossible would become possible not just for my husbands sake but for others around the world that die or suffer from Hypophosphatasia on a daily basis. We had many family and friends who started this journey of prayer when my husband was born and many who have joined us throughout the journey of our lives or for just a season and we are truly grateful for their prayers, love, support, and for cheering us on!
     This week not only did a miracle happen but a dream also came true. Several years ago I had a dream that my husband was in a children's hospital for a week and they were running many tests. At the end of the week they told us that next week they would start the treatment and as they left the room I asked, "What is the treatment?" There was no response. You know that feeling when you're reading a book and you get to a really great part so you want to read the next chapter but for some reason you can't? Well this dream was a great chapter and I thought it was so weird that it had to be God telling me something. Hold onto your faith...hope a little longer....pray and believe a bit more... I told a friend the dream and she commented on how strange it was. It was pretty strange in my mind but time went on and I found out that there was a drug trial. It started around the time I had the dream, only babies and children were primarily the ones being put on the drug, and it saved lives! I cried tears of joy when I saw the first pics and videos of babies and children whose lives had been improved by the drug now known as Strensiq by Alexion Pharma. This was a miracle that we had been praying for and what I believe my dream was about! This week the FDA approved the drug Strensiq for perinatal onset, infantile onset, and juvenile onset Hypophosphatasia. There are many pieces to the puzzle and people who contributed to research, testing, and many families who paid the ultimate sacrifice to keep trying for a treatment. Thank you just doesn't seem to do it justice but we are truly grateful for all things coming together that have brought us to this day. Today, Oct 30 is Hypophosphatasia awareness day. Thanks to Deborah Sittig of Soft Bones here is some information she shared about  how to help us spread the word. Please feel free to share this post.

"Today is HPP Awareness Day! 

HPP HEROES, UNITE!
Join the Uncommon Strength Global Mission

UNCOMMON STRENGTH CAMPAIGN
As a HPP Hero, your mission is simple – unite and inspire those impacted by hypophosphatasia (HPP) around the globe and raise global awareness for HPP.

Living with or caring for someone with HPP isn’t always easy. It demands a great deal of courage and inner strength day in and day out. It also takes a bold unified effort.

On HPP Awareness Day (October 30th), we’re encouraging the world to join the fight. Whether it’s a caregiver, a friend, a family member, a co-worker, or your child’s teacher, let them know about this important cause. Together we can have a huge impact. HPP Heroes, Unite!

WAYS YOU CAN TAKE ACTION
Ø Support HPP advocacy organizations around the globe by signing their international petition to officially recognize October 30th as Hypophosphatasia Awareness Day.
Ø Encourage friends and family members to visit the Uncommon Strength campaign website – www.EveryDayWithHPP.com – and join the HPP Hero community.
Ø Build your own personal HPP Hero on www.EveryDayWithHPP.com and encourage your friends and family members to do the same.

Visit our Soft Bones website for more information www.SoftBones.org

www.EveryDayWithHPP.com"