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!

     

Can You Fix This?

     Tonight, as I was searching my email for a blog post my cousin Connie Cameron wrote http://www.conniecameron.com, I came across an email I sent to a few friends in 2014. And as I embark on a new season in my life of doing things that sometimes I don't feel perfectly equipped to do, I find this article feeding my soul during yet another season of transition. I hope this speaks to someone else who may be in transition themselves, as I find myself moved by this particular piece in my own season of transition.

     "I thought about posting this on Facebook but decided that was too big of an audience right now. So I am sending this to three special ladies in my life. Thanks in advance for bearing with me while I reflect on some things. They say you learn something new every day and it seems that lately I have been learning on overdrive massive amounts of new info. It all reminds me of a dream where I had to buy five gum balls in order to get the information I needed. Hmmmm, perhaps that is part of this season for me.

     Today, Sharon Martin (my Pastor's wife who is leaving our church after her husband has been on staff for 32 years) walked up to me and said 'I have an afghan that my grandmother made for me (these moments when people tell me about this stuff I am about to cry and or panic because I do not know what is coming next but it usually stretches me) and the dogs have put a couple of holes in it. I know it won't be perfect but would you try to fix it please?' I said 'where do you want it after that?' To which she replied 'just to store it at my Mother-in-law's house for now.' So I said I would look at it. I honestly felt like I would cry when she told me her grandmother made it. Not sure which Grandmother made it but if it is the one on her Mom's side (which I found out later it was) it would be an interesting coincidence as that woman and her family were neighbors with my grandparents on my mothers side. Particularly interestingly, is that that specific woman sat with my grandmother while she labored for her first child until the Dr came. Life is amazing and strange at times.

     I have only been asked to do this one other time and that was by a friend for her daughter whose blanket that had been sent home from the hospital with her had been loved beyond repair. I just made her a new one and  I believe they put the loved one away for safe keeping. 

     I went to look at Sharon's afghan today and it was shades of blue with a bit of black. When I looked in our supplies I found that we had a yarn that was a light shade of blue that did not match perfectly but would repair the hole and keep the blanket from raveling to threads. This meant that I would have to creatively make a patch out of just a few stitches. Something that I had never done before, something that would not be perfect, something that would be a labor of love, and something there were no instructions to be found for (there wasn't even a tutorial on YouTube!). I prayed a prayer for the Lord to help and guide me and He did help me as I realized that the process was almost like doing it upside down and backwards since by the stitches it looked like the grandmother may have been left handed.

     When I was finished I was glad she had used different shades of blue as most yarn can not be matched years later due to fading and dye lots expiring. The experience made me think about how many matters of the heart can not be fixed. Sure they may be patched up with different material to fill the hole but it will never be the original piece exactly. It also made me realize I can not always fix everything no matter how hard I try. The afghan, like people, can begin to unravel if not repaired and as much as Dave and I have tried to help people and pray for then some of them are still broken. Some have been healed, some have moved to heaven, some still need freedom, and some are left without a mom on mothers day. Some are still a mess and all I can do is all I can do and it's all the God wants me to do. 

     I am reminded of an illustration we had during a marriage conference. They took yellow play dough and blue play dough and they mixed it together about 2/3 of the way. Then they told us to pull it apart and completely separate the blue from the yellow. It was impossible. People's lives are so mixed up at times and even when you try to help them so many of them want more from you. It seems at times it is never enough, even though you feel you have layed down and poured out your life. I fixed the hole in the blanket today. I can't always fix the hole in peoples hearts but some of them...they really don't want you to or even God to. Thanks for letting me write this. I love you all! I believe I am hiding in the shadow of His wings and He is my defender."