Soft Bones Region Lead Training & Carlos Bakery AKA The Cake Boss

                                                                    Here I am a Region Lead with Soft Bones
                                                                            Photo Credit Rebekah Talkington


 Recently, I was honored to accept a Region Lead position with Soft Bones US Hypophosphatasia Foundation. This organization has helped so many with hypophosphatasia through education, connection, and research. David, my husband, has hypophosphatasia (HPP) and I remember the day about ten years ago when a doctor told us that he had one other patient with hpp and we were so excited and asked if they could arrange a meeting. They said maybe but unfortunately it never happened.

     Most rare disease patients these days are meeting through social media groups such as Facebook and it is wonderful that there are now ways of reaching out to others who have the same struggles. Just this last summer, my family discovered that meeting in person others who share similar experiences is such a powerful experience that patients want to do it over and over again once they start. It's so amazing to be rare and meet another person who is like you. It's empowering, it's validating, you have found your tribe, your family, that you never knew was out there before. Part of what I will be doing as a region lead is to help facilitate those meetings in my area, and I'm so excited to be apart of such a wonderful journey.
           

                                              Out to dinner with fellow Region Lead Dawn Gullett. 
                                                                            Photo Credit Jonathan Gullett

      To make sure I was prepared, I went to New Jersey for some training with other region leads from all over the country who bravely said yes to volunteer our time and help Soft Bones and patients connect so that those struggling know they are not alone. This was a great time of teaching, learning, and empowering connection as we saw old friends we have met before, brand new friends, and some friends we have "met online" but had yet to meet face-to-face. This time definitely makes me think of the saying "Make new friends but keep the old, one is silver and the other is gold."

                                                       I can't believe I'm at Carlos Bakery!

     After training we went out to an amazing dinner and after dinner as we were walking out to catch the shuttle back to the hotel someone said "Do you want to come with us to the Cake Boss place? It's about a five minute walk from here." What?????? The Cake Boss place is 5 minutes walk from here???? No way!!!!! Our family loves to watch the show and my husband has been saying we should go there someday! Well, I didn't wear the right shoes for this but I have to go because my husband couldn't make this trip in the middle of the winter. So we walked down the street to the cake boss place, Carlos Bakery, and there we all were for a sweet treat.

Photo Credit Jenna Aoga

     When we got there I was in awe! Then they asked me would you want to take Dave something? My first though was, what could I fly back with? We got some pics and I begged everyone please don't post this to Facebook yet. I picked out a brownie to take home to my sweet husband and took pics with sweet friends. I tucked that brownie in and brought it home to my hubby the next day and he split it with me and our two sweet daughters! They couldn't believe it! I think our daughters words were "Shut up! No way you went to Carlos Bakery!" Yes, yes, I did thanks to a trip I said yes to and some new friends who said lets go!

                                                   My favorite cake they had with Calla Lillies!

      Hey Carlos Bakery! Thanks for being awesome! I need to do a fundraiser this year as a region lead for Soft Bones. Would you consider donating or partnering with us to fight hypophosphatasia www.softbones.org ? Either way I hope to come back to one of your locations some day with my husband and daughters to get our first canoli together! Oh and the Calla Lilly cake is one of my favorites you had on display! Truly amazing! Thanks Soft Bones for the training and opportunity. It lead to a dream fulfilled in part for our family!

                                                I need to come back with the family for a cannoli!

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