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The SDS Registry celebrated by hosting the SDS Family Day (conference) in Boston, MA, US. A summary of the event was published by the SDS Registry in their newsletter, which they published in December 2019. Click on the newsletter image below. "We benefited so much from the cutting-edge contents and all the opportunities to network with families, doctors, and researchers" - an SDS family attending the event

Boston Children's Hospital's Patient Stories section features an SDS family's story. Read the whole story, here. Sophia Namazy, 14, wrote a children’s book called Pigtails, Ponytails and Fairy Tales that’s currently available on Amazon about their 8-year-old sister Poppy’s bad hair days, and dedicated the story to Max, who has Shwachman-Diamond Syndrome (SDS). She is also donating the proceeds from the sales of the book to support research on Shwachman-Diamond syndrome being conducted by Dr. Akiko Shimamura, Max’s oncologist and director of the Bone Marrow Failure and Myelodysplastic Syndrome Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “If we can help other kids like Max with the money we raise, or if we can even find a cure, it’s worth it,” says Sophia Read the whole story, here. The book is available for purchase on Amazon, here.

Written for The Spinoff magazine (NZ) / By Kiki Van Newtown In this story, you can learn about this Rock 'n Roll family's journey with SDS in New Zealand. Read the article at its original source on The Spinoff, here. “...I forgot about life outside the illness. I was no longer a punk rock hooligan. I was the parent of a very sick and fragile child.” writes Kiki.

In Loving Memory Tavi passed away from complications of SDS and stem cell transplant surrounded by her loving family. Her mother Allison, shares some beautiful words about grief on this Rare Disease Day: "Grief is so hard to wrap your head around. At least it is for me. There are so many days that I am so happy, content and grateful for my life. There are a few days-usually birthdays, memories of events that happened on that day and of course her death that just hit you like a ton of bricks. But then there are days like tomorrow where it sneaks up on me that just overwhelms me. It is Rare Disease Day, a day to support and remember our rare disease warriors- but to me it is so much more than that. It is a day I had never heard of 8 short years ago. Yes, I knew there were rare diseases. Our sweet niece had a rare disease. But never in a million years did I ever imagine it would be something that would change our lives. And now it defines our family. Our children. And especially our Tavi. I often think about losing Joey- should we have pushed more to find out what happened to him? Would we have discovered then that we were carriers of a rare disease and could’ve prevented our future children from having it? These are questions that I will never have answers for. And that is hard. The kids and I looked at pictures of Tavi, talked about her, looked at her clothes and her blanket that I keep in my nightstand- we cried. It is so hard to try to understand why this disease came into our lives and took away our children. And to try to explain this to Anika and Dresden is impossible. All we can do is continue to talk about her. Share her short life and spread awareness. I am sad, especially tonight. I miss her sweet face, her fighting spirit and the love that we shared. Love never dies, but a part of me continues to die each day without her. It still just feels like such a dream- but it is my reality and I have to continue to learn how to navigate through my life without her. I will be ok. I am surrounded by so much support, love and strength. And I appreciate more than anyone will ever understand that I can talk about her openly and share my feelings. But grief is hard. It is so so hard. Hope to see you in my dreams tonight, my sweet girl.

In Loving Memory Andrew passed away from complications of Shwachman-Diamond Syndrome (SDS) in 2012 at just three months old. He had a very severe manifestation of SDS and didn't have a single "easy" day. He fought to to live all his life to live, and is dearly missed by his family every single day. From Andrew's obituary: After months of fighting, Andrew Bryan Lillywhite, 3 and a half months, returned to his Father in Heaven, while in the loving arms of his parents on Friday, October 19, 2012, at 11:28 a.m., in Albuquerque, New Mexico. Surrounded by family, this beloved child left our world of pain and is now an angel at peace, watching over his family and awaiting the day when they will be reunited in Heaven. Andrew was born on July 1, 2012, at 8:04 a.m., weighing 7 lbs. 5 oz. and 19 in. long. He had blue eyes and beautiful blonde hair. Andrew had a sweet smile and personality. He loved to be cuddled and held by his family. Andrew's journey on earth was short but he made an impact on countless lives all over the world.