Today, we had the first Soft Bones HPP Info Exchange in Ohio. An info exchange is a new concept for a meeting where HPP patients, families, caregivers, doctors, dentists, researchers, and Soft Bones representatives all gather together to discuss HPP and related issues. This meeting was a dream come true for me and my family, as we've lived through doctors and medical staff who did not know what to do with my husbands disorder. When we first started this journey we might hear of a doctor somewhere treating a patient with Hypophosphatasia (HPP), but we were never able to meet them face-to-face or schedule an appointment to speak with them. So this meeting was a shift towards more communication between patients, advocates, and medical staff as well brought awareness to Hypophosphatasia.
The idea of this meeting began with a thought I had while I was with Soft Bones Advocacy in Action at ASBMR this past September. While walking around Atlanta it occurred to me that we could possibly have a meeting at Ohio State University. I turned to Monica Baugh, who is from Ohio, and asked her, "Do you think we could have a meeting at Ohio State University?" She replied, "Sure, why not?" Then that Saturday night in Atlanta SoftBones held a dinner for HPP patients, Alexion Pharma, and doctors who have contributed to HPP. Dr. Ing, an endocrinologist at Ohio State University, asked if we would like to do something similar to the event we were attending at OSU and if Monica, my daughter Rebekah, and myself would help organize it. We all happily agreed and I asked Denise Goodbar what we should do to get this meeting organized and planned. Denise grabbed Deborah Fowler and they spoke with Dr. Ing that night about doing an Info Exchange meeting. He already had a date in mind in November so there was not much time to get things organized. However, we all worked together through email and phone calls and by Nov 4, 2016 we were ready and the meeting was happening.
Dr. Ing helped us get a room at OSU and we all gathered there together in a myriad of HPP patients, caregivers, undiagnosed relatives, a genetic counselor, dental researcher (Dr. Brian Foster) and two of his associates, Soft Bones President Deborah Fowler and Denise Goodbar as well as Sue Krug and Dr. Luke Mortensen via video conference and in addition a lovely surprise visit from Dr. Rebecca Jackson. We enjoyed breakfast together, special goodies from Soft Bones, as well as a lunch that was delicious!
Delicious food to keep us nourished during the meeting provided by Soft Bones. (Photo Credit: Denise Goodbar)
Next, Dr. Foster, of Ohio State University College of Dentistry research, shared with us the basics of teeth development and structure as well as different things that can impact teeth development and dental health. He shared that the cementum is the most affected in an HPP patients teeth, but we need research in this area. He also emphasized more dental publishing about HPP in fields such as orthodontia is needed. It was interesting to hear him and his associates tell about their research in the lab and what they are working on. Dr. Foster has been working with HPP mice and is connected with Dr Milan who works at Sandford Burhnam. They are currently working on ways to develop milder cases of HPP in the mice to see how they are affected by treatments. It's so exciting to see a growing interest in HPP with OSU's medical and dental faculty as well as Nationwide Children's Hospital.
Dr Patrick M. Lloyd Dean of OSU College of Dentistry demonstrating first year student dental methods.
(Photo credit: Denise Goodbar)
In the afternoon those who were able to stay enjoyed a tour of Ohio State College of Dentistry with the Dean, Dr. Patrick M. Lloyd, as our guide. It was amazing to see the process students go through to become dentists and go into different specialties such as prosthodontics and orthodontia. At the end we had special clearance to go into Dr Fosters lab to see the exciting work they are doing there. Research is a key and Soft Bones recognizes that every year with their grant. This year Dr Foster was the winner of the grant and we were honored to hear from him and see what he and his colleagues do in their lab.
Standing is Dr Brian Foster winner of Soft Bones 2016 research grant in the OSU school of dentistry research lab with staff and our tour group.
(Photo credit: Denise Goodbar)It is my belief that we are connecting the dots for HPP with the help of Soft Bones to move to a new level of treatment. Also, it is very likely in my opinion that Ohio will not only treat patients locally but also beyond state lines. I know in the past we would see specialist's who had seen a patient(s) earlier that day who had come from out of state to see them and had been doing so for several years. Through hearing from others about their experiences with HPP, I know that many people travel out of state to start their HPP journey. However, I believe it is important that we connect with those that are close to home so as to have local support when a fracture occurs and have that relationship and continuity of care for HPP issues. Having both the support in far-away cities and close to home is a beautiful circumstance, and I pray that more people discover those around them rallying to their aid as my family has had people do in the past as well as in recent events in our lives.
(Photo credit:Rebekah Talkington)
What Soft Bones has accomplished in just a few years has completely amazed me as I've watched it unfold! The Info Exchange was the first opportunity I have had to hear Deborah Fowler speak at a patient meeting and when I say that she is on the front lines with Soft Bones fighting HPP it's the truth. She, along with Soft Bones, lobbied to get Oct. 30th on the calendar as Hypophosphatasia Awareness Day and that was granted in a wonderful victory. Now, internationally Oct. 30th is recognized and celebrated as HPP Awareness Day. That victory was incredible but there is so much more that SoftBones and the HPP community is doing. From networking with other HPP organizations around the world, to fundraising and connecting researchers with grant money, to helping HPP patients individually as well as in groups, they truly are connecting the dots to find the key to HPP.
This meeting gathered together doctors, researchers, patients, medical professionals, and caregivers to each have a voice in the discussion of what is going on with HPP, treatment, and what we can do in the future. I am so excited to have been a part of the process to facilitate the gathering of such a diverse group of people and I look forward to seeing more of the dots connected for an amazing, bright future with a cure for HPP.
If you have HPP and are from Ohio please comment on this post, message me, or email me or Soft Bones to let them know if you are interested in participating in a meeting in the future.
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