Soft Bones HPP Exchange at Ohio State University

Nov 4, 2016

     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.

                                           In the OSU Dental research lab. (Photo credit: Denise Goodbar)


     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.
     

     

                         Under the microscope a deer jaw from the archeology department. (Photo credit: Denise Goodbar)
                                       

     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)

      The information that we received during this meeting was so helpful to everyone gathered. First Dawn Allain, Genetic Counselor and Associate Professor of Clinical Medicine, Ohio State University, Wexner Medical Center, shared the path of how HPP can be diagnosed with genetic testing. She also talked about how we are still learning about HPP status such as carrier versus mild forms of HPP.

      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.

                          Our dear family friend Dr Rebecca Jackson of Ohio State University Wexner Medical Center. 
                                                                         (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.
             

                                         Thanks Soft Bones for hosting our first meeting in  O-H... I-O!


      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.

Copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

   

Spring!!!! We made it!!!!

   

Photo Credit: Rachel Talkington

Ah Spring you have finally arrived!!! We have longed to see you come and give way to summer!

     We live in the state of Ohio, in the United States, and a few years ago winter became much more difficult after my husband broke two femurs in 6 months! Although the snow is white and beautiful and the ice can be pretty from the inside of the house it came to have another side for us. Weather changes meant increased pain with my husbands HPP, overall fatigue, and discomfort. Riding that roller coaster is not fun nor is it seen as something to look forward to. I have realized in the last few years in February I would start thinking "come on March". If we can just get to March I believe we will make it. Well we did it again.
     

Photo Credit: Rachel Talkington

       Surprisingly this winter we didn't have to shovel as much snow and put out as much salt and calcium to melt the ice off the deck, ramp, and driveway for safety for Dave. For this we are very grateful. This year was improved also due to medical treatment as well for Dave and that was a blessing as it did help decrease some of his pain and increase his mobility.

                                                              Photo Credit:Rachel Talkington

     We also received notice that another year of treatment has been approved for Dave and that is something we fought long and hard for last winter. This winter it was pretty seamless, is was wonderful to have breakthrough in an areas that before seemed like as cold and harsh as a winters wind. Like night and day! Soooo grateful!!!

                                                             Photo Credit:Rachel Talkington

     For those who have asked you can access the update on Dave through his HopeHelpLive link. Thanks to all who have helped us with that project!

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Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

David Needs Your Help to Get a Handicap Van!

12/2016
     Some call it faith, some call it positive thoughts, and some call it positive confession but I am here to tell you we are getting a new Handicap van. How? Well let me tell you about our options.

This is a possibility for David's new handicap van. 

    First of all  our current handicap accessible van is a sweet tan colored Dodge named Goldie. Goldie came to us in 2009 when we desperately needed her. The year prior to this my husband Dave had broken both of his femurs within 6 months of each other. After this occurred he had to be in a power wheelchair all the time and we needed a way to transport that chair wherever he needed to go. Unfortunately, there are no government programs for those who are on Social Security disability to transport a power wheelchair when people need to go to other places than their home. I know it's hard for some of you to believe, but it's true and it can keep those who are disabled home-bound for months at a time.Family and friends prayed with us and looked for a handicap van, and eventually we found a used one with low milage on it. Goldie was given to us after many months of friends and family fixing it up to where the mini vans ramp would deploy properly and a new seat was put in for Dave so he could turn, transfer, and drive. We didn't complain or push for the van to be finished sooner during that time, we just prayed and trusted God had a plan and indeed He did.

                                        Goldie (AKA Captain Caveman), our current handicap van.

     Fast forward to the last few years where friends, family, our pastor, and mechanic have begun to encourage us to look for a new van. They would point this out in different ways like, "You know the van won't last forever," and "you're going to need to replace that some day." This was very kind of them, honestly, but we don't have the money to purchase one and finding an affordable van that has all of the necessities that meet my husband needs is nearly impossible. While I have looked into it, I've not been able to find grant money for one either and if you know of grant money, a program, or someone who is giving away a handicap van please contact me at sharonnmylife@gmail.com. We need the van to meet some necessary qualifications for my husband David's needs and of course pass our mechanics inspection.

      As a result of our search, however, we've found a few ways we may be able to get the help we need. If you would like to help us acquire a handicap van and meet any other medical bills for David we have set up a HelpHopeLive campaign. HelpHOPELive is a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. You can give through this link to help David and to top it all off it's tax deductible. If you work for a company that does matched giving HelpHopeLive can receive that as well for David! All checks should be made out to HelpHopeLive with the memo section noting "In Honor of David D. Talkington".

Visit this link to donate or mail to:

HelpHOPELive 

2 Radnor Corporate Center 

100 Matsonford Road
Suite 100
Radnor, PA 19087

     The other possibility we have found in this process that could help us buy a handicap van is called a Stable account . Stable accounts are tax free savings plans for disability related expenses where you can save and invest without losing needs based benefits. The cool thing is that we have opened one up for my husband and we, our family, friends, and even companies can contribute to help us get the van or other things that my husband may need but would not be covered by our income or other programs. We have started the account out with $50 ourselves. My husband can receive up to $14,000 a year in this account. We would appreciate it if you would consider giving toward that goal by Dec 31,2016! Then early in 2017 our goal is to raise another $14,000 in this account. That sounds like a lot of money but  the new handicap vans we have been looking at that would suit my husband's needs average about $60,000. Do I believe in miracles? Yes I do!

                                                              My husband David Talkington. <3

Please consider giving into my husbands Stable account. If you do give please respond to the email we have sent you from Stable or send me your email address to sharonnmylife@gmail.com so I can send you the link. The gifts to Stable accounts are not tax deductible and are not compatible with matching gifts from employers. Thank you so much for reading this, considering it, and praying that this need will be met. I will update with another post when we receive the van or when the Stable account reaches $14,000 for the calendar year. Please feel free to share this blog post!

                                        Copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

Hypophosphatasia Awareness Day and Our Soft Bones Family

Oct 30, 2016

 

     Happy Hypophosphatasia Awareness Day Oct 30,2016 ! I first heard the word Hypophsphatasia a couple of years after my husband and I got married. He had a wrist swell up and the X-rays made the Dr think he possibly had cancer! What?!?!?! No he just had Hypophosphatasia. Here is a bit of information from the Soft Bones website 

My husband Dave! A little guy with HPP!

What Is HPP?

HPP is a condition that affects healthy development of bones and teeth, making bones softer and more likely to fracture. People who have HPP have trouble making an enzyme called alkaline phosphatase, or ALP. Without this important ALP enzyme, certain chemicals build-up and prevent calcium and phosphorus from binding together and depositing in the bones. As a result, bones can become soft, curved and fragile, and teeth may become loose or fall out prematurely.For more information, continue reading What Is HPP.

     

My husband Dave. One of my HPP heroes! 

As my husband started his journey as an infant, his Mom saw the value of communicating with doctors, getting treatment for his symptoms and continuing to search for a diagnosis. She was willing to do whatever it took. She wrote to physicians about David's case and fortunately they listened. She must have been surrounded by talented doctors because in the 1960's not many were diagnosed with hypophosphatasia (HPP). They just didn't know much about it or how to treat it. Early on in his life, he was misdiagnosed with cystic fibrosis and his Mom supported that cause through patient advocacy and fundraisers. She still had the awareness pins when she got her upgrade and went to heaven. 

Little did I know how much all this would mean until years later when Dave's wrist flared up. I told Dave that day that I was on a mission to find someone who could help him. Many years later I did, in Canada! Yes, the journey first took me to Canada through a website and a Yahoo group. Through that small but mighty group, I met Deborah Fowler who started Soft Bones. Years before, I had found a group that dealt with many disorders that impact children, including HPP.  I emailed them even though my husband was an adult, but I never received an answer. 

                                               

                                           Deborah Fowler founder and President of Soft Bones

Shortly after, Soft Bones emerged and covered a full spectrum of support for HPP patients, reaching out to prenatal hpp babies, the oldest adults, as well as caregivers. I don't know what Deborah thinks about this, but I believe God sent her to help not only her son Cannon who has HPP. In the Bible, Deborah was a leader who a man approached when he didn't want to go to battle alone. She agreed to go and the battle was won. I believe we have been in a battle for years to first find a treatment and a ultimately a cure for HPP. God chose a woman who is trained and gifted in communication and media to help spread the word and connect the dots for HPP. 

When I went to Atlanta recently with Soft Bones for an Advocacy in Action event, I saw the vision come together for the first time. Soft Bones connects the key players from top level Doctors, Researchers, Patients, Caregivers and Advocates to forward research and to  find solutions for HPP and the community. This is a national as well as international vision as we work to connect people around the globe. 

Deborah, I am honored to know you and have you as a part of our Soft Bones family. In some of our darkest hours with our most challenging battles with HPP Soft Bones has been there calling and connecting to see  if we need anything and what can they do for us. I truly don't know what I would have done without them. I believe they played a huge part in the life saving drug Strensiq being approved and saving the lives of so many HPP patients to this day.

We need your help to continue on as Soft Bones continues to fight HPP on multiple fronts including the following. 

   Your gift will support

• Educational programs and services
• Policy and advocacy efforts to increase recognition of HPP and access to necessary services and treatment
• Advances in research to further new treatment options and an eventual cure
• The Emergency Fund to support children and adults with urgent, life-threatening HPP around the world, providing them with access to physicians who have experience with HPP
• Travel grants to allow those with HPP, their families and caregivers to attend our patient education meetings

 If you would like to make a tax deductible contribution to help fight HPP please click here.

Copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

When Your Bestie Is Nominated For Woman Of The Year-Oct 6-8, 2016

     Recently my bestie, Kelli Sears (she is currently launching a new blog, check out her Twitter and Facebook for more details), called to say she had been nominated along with 6 other women for Woman of the Year at Drenda Keesee's  Love Encounter conference. She was amazed but I wasn't at all. Why? Well anyone who has met Kelli Sears knows that she is absolutely incredible. She is loving, kind, and always giving to others. She was humbled to even be nominated and I eagerly told her I was willing to attend the conference with her if she would like. She was happy to have me along with her for the ride and we got to enjoy the experience together!

                                                (Photo credit: Stephanie Sears)

      The conference was amazing! Everything was done with the highest degree of excellence to make sure that every woman who was attending had everything she could possibly need for the conference. There was breakfast, snacks, water, lunch, great teaching, and lots of joy not to mention the love of God that was clearly present with us.

      The music was amazing and was played by the band Open Heaven from their new album release, Lion of Judah. The speakers gave some amazing talks on the simple, difficult, and just plain funny stuff women go through while tying in encouragement from the word to keep moving up! We had lots of fun as Drenda talked about the Jesus movement and encouraged attendees at Love Encounter 2016  to dress from that era for the conference. We got some great pics in front of a hippie van that was at the conference and several of Kelli's family joined in the fun with us!

(Photo Credit: Megan Mizer)

     On Saturday morning Kelli had to be there early to get her makeup and hair done with all the nominees, as well as put on the new outfits that were provided. It was inspiring to see the nominees in awe of the fact that they were nominated for the award. Kelli even said, "Who am I that I am here among these other women? I am so humbled."

     It is my belief that she was nominated because like Esther in the Bible, Kelli has come into the Kingdom for such a time as this. As a believer in Jesus, she is an amazing daughter, sister, wife, mom, Mimi, foster mom, home school mom, school psychologist, missionary, business owner, and amazing friend.

   

     I met Kelli Sears over 20 years ago and initially thought she was too busy to be my friend. However, a few years ago we met over a prayer and a vision which led us to begin to talk on the phone, capitalizing on her driving time to schools to check in with each other frequently. We pray, we laugh, we talk, we cry, we dream, we encourage one another, and we celebrate great times together! This precious time continues today as we journey alongside one another.

 

The last couple of years have been different for us with Kelli launching her new business Navigating Autism Plus. Due to her busy schedule, she is using driving time to return business calls limiting our contact. However when we are together there is still that kindred spirit friendship that is oh so sweet!

     Kelli has been through many difficult, traumatic things that could have derailed her over and over again and yet her spirit has grown strong and resilient. Putting her fighting spirit behind the cause of helping children everywhere, protecting them from abuse, neglect, and learning how each one of them learns best to help school leaders embrace their unique style!

    

      On Saturday of the conference when they called all the ladies out one by one their inspiring stories were shared from the platform. When they finally called out the name of Woman of the year 2016 Kelli Sears was the name they called which made the crowd cheer enthusiastically! Kelli was surprised but also happy which absolutely thrilled me as I watched my friend who has spent her adult life serving so many over herself be honored in such a wonderful way. Congratulations my friend! The ride has just begun and it's going to be a great one!

   

(Photo Credit: Stephanie Sears)

      Stay tuned to be connected to my friend Kelli's new blog and the next chapter of her story......
   
   

   

Copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

    

Guest Post Update From My Husband Dave

Guest Post Update From My Amazing Husband Dave

My husband Dave just celebrated a birthday Wednesday and this is what he wrote in response to all his birthday wishes on Facebook.

Dave is a funny guy and wanted to share some big news with our family and friends!

We hope you share in our joy of celebrating life!

     "Wow! Where do I begin? I want to thank all those who have wished me a happy birthday! It's amazing what the Lord has done in my lifetime...it wasn't too long ago that I wondered if I was going to make it to 50 let alone to today. I know that it's been the goodness of God. I also know it's been the prayers of my parents, siblings, aunts and uncles, other relatives, and that many of you, have done on my behalf. Although the disease that I deal with should have been fatal even through my childhood years, here I am. I definitely have hope in my heart! Hope for today, tomorrow and the future. I say that from an interesting position. As many of you know, I have been in a wheelchair since 1995...due to the ultra rare disease I have, called Hypophosphatasia (HPP), which is a musculoskeletal disease. Multiple breaks, muscle weakness, pain etc. But last fall the FDA released the only life saving drug to help with the symptoms. This is not a cure, but it has saved many babies that would have died otherwise. I started the drug in March. The drug basically is supposed to replace an enzyme I'm missing in my DNA. Again, It's not a cure..but it is the next best thing! What does it do for me? It's really helping me to have a better quality of life... This drug is something my doctors said I'd never see in my lifetime!!! They were happy to be wrong....and so am I. I'm such a blessed man. I have a wonderful wife and children, great family and friends, a great HPP family, great Pastors, staff and church family! People who have stood with and encouraged me and my family during the easier times and when I've (we've) been battle wounded and worn. Thanks again.....from a grateful heart.....Dave 

It is I who no longer lives but it is Christ who lives in me!"

copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

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! 

copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.