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."

An Alternative for Christians to Obamacare

     Lately I have had friends, and friends of friends asking me personally or posting on social media trying to find an alternative to Obamacare. There are many reasons people are looking for solutions and so I have decided to post on my blog about it to help others who may want to know about examples of alternatives to Obamacare such as the one I have been using for several years called Christian Healthcare Ministries (CHM).
     Christian Healthcare Ministries is a group of Christians that share medical bills by committing to giving a certain amount every month that is used to pay for other members medical bills. Mine is currently $150 a month at the Gold level but they do have cheaper options. There is a $40 yearly fee for administration and an optional program you can add called Brother's Keeper for about $25 per quarter ( this is based on the needs at the time so it varies. I think the lowest mine has been in 3 years is $4 and the highest $26). I highly recommend you get Brother's Keeper if you join CHM. They also pray for others medical needs, bills, and sometimes send them cards of encouragement.
     For many years I was afraid to take the leap of faith to sign up for such a program as it is not insurance and there is no guarantee that your bills will be paid. I have been thinking about it though, doesn't it take faith to purchase insurance? Anyway, upon researching this though, when my health insurance premiums became unaffordable for our budget, I discovered some friends or friends of friends that had used Christian Healthcare ministries with stunning results! My brother in laws Pastors wife over 30 years ago had cancer and he told us that every bill was paid for! In the last few years a dear friend of ours,who is a member of CHM, had an accident and needed surgery. He had that surgery and every bill was paid! Most recently I have a family member who has been ill for months and they submitted the bills along with applying for discounts at the hospital where they had testing. The hospital gave them a discount and it was over $500! $500 is what CHM considered their responsibility personally for this incident so that $500 was met by a discount!!!! So no out of pocket in the long run for them! I love that! In the past they paid hundreds of dollars every month for insurance with a deductible of thousands of dollars and they got next to no benefit from their insurance. They are thrilled with CHM and are so happy at all the money they have saved on insurance the last few years as well!
     It also feels good to know that every month the money you are giving helps others directly. There are many other aspects you can find on their website and if you have questions you can contact CHM or message me.You currently get a free month if you enroll online and use the code RDL1. The other thing I like about them is that if you mention my name and member number I get a free month of CHM after you pay for your first 3 months. My name is Sharon Talkington and my member number is 156885.  I hope this will help many get the help they need at an amount they can afford. For information on how this meets Obamacare and also tax information see CHM website. http://www.chministries.org

Diapers, Deals, and Charity!

    

So my friend Maggie Nowland asked how to save on diapers because they buy them every month for the food pantry. Well to Maggie all the rest of you out there that buy diapers for your baby or to donate to charity this one is for you!

First you gotta find out who has diapers on sale and then match that up with manufacturers coupons from the Sunday newspaper. So for example CVS has Pampers on sale this week 2 for $19.There are manufacturer coupons out there for Pampers 10-30-2011 newspaper Proctor and Gamble insert has a $2,00 off 2 packages and 11-27-2011 Proctor and Gamble insert has $1.00 off 2 packages of Pampers coupons.

Now if you do not have the paper or the coupons ask around. Your family, friends, neighbors, Facebook friends or church may have some. I have posted before on Facebook that I was looking for a certain coupon or insert and have had people more than willing to give them to me. Also my church has a box that anyone can donate coupons or receive them. It's a great idea that has helped many thanks to my friend Angee Perry!

Now coupons are $ that you don't have to spend out of your own pocket so find some.: ) To sweet this deal CVS has included Pampers with certain items this week that if you purchase a total of $30 or more then they will give you a gift card for $10. I called my local CVS and they said one of those is a prepaid VISA! Now I have not done this deal yet but they told me you can do this deal 5 times and so that would mean 5 $10 VISA gift cards. I would call the store first to see how their supply is on these before I went if you want to buy a lot of these. Anyway if the Visa can be used after the first transaction I would use it on the second so that you reduce your out of pocket expense.

So it would look like this

4 packages of Pampers for $36 + tax

receive $10 Visa

So after you use the Visa in the future you only have $26 + tax in 4 packages of diapers or about $6.50+tax a pack. Not bad huh?

Now CVS also has a loyalty card that you need to scan to get this deal and it will also keep track of how many packages you buy this year and for every 6 packages of a certain brand you buy they will reward you in a day or 2 when you stop back in with a coupon for a 7^th package of diapers for free! They have a machine that looks like an ATM at most of the stores. Scan your card there and that coupon should print along with any others they have for you. I hope this helps and I hope lots of you save your coupons to help your local food pantry and my friend Maggie Nowland. Or better yet go pick up some diapers yourself to donate.: )

Blessings,

Sharon