Make sure to check out Part 1 of the Schroeder family's story before reading further. CURED Currently, the Schroeder family is doing as well as they can to manage and to ensure…
Before you read on, make sure to check out Part 1 of this story. What is Shwachman-Diamond Syndrome (SDS)? First identified in 1964, Shwachman-Diamond syndrome (SDS) is a rare inherited condition that…
When asked about the key way that the medical field can better serve patients, Pari Schroeder doesn’t waver: multidisciplinary care. She acknowledges that the medical system can often be very…
In the first year after her daughter Nora’s Shwachman-Diamond syndrome (SDS) diagnosis, and her daughter Kayla’s subsequent diagnosis, Lisa Superina raised over $130,000 towards SDS research. She held a comedy…
Before you read on, make sure to check out Part 1 of our interview. In Part 1, Kyla discusses the two-year diagnostic odyssey that brought her to the point of her Gleich…
Written by Libby Wilson, living with metastatic breast cancer Once there was a girl who met a boy. The girl chased the boy until he agreed to be her boyfriend.…
Make sure to read Part 1 of Kandise's story. In Part 1, she discusses some of the symptoms of hereditary multiple exostoses (HME), as well as how she finally reached a diagnosis.…
At nearly 33 years old, Kyla McGaughey has overcome more challenges that many people can imagine. Her medical journey began in 2019 and it took over two years for her…
When Richard Poulin's daughter Rylae-Ann was born, it wasn't long before he and his wife began to wonder if something was wrong. They both felt confident in understanding the…
Ready to read? Before you do, make sure to check out Parts 1 and 2 of Tracy's story. In Part 1, Tracy describes the symptoms that led her to pursue a diagnosis. Part 2…
Summer Wroniecki fell in love with dancing at a young age. At just 2.5 years old, she was already taking over the dance floor at Highland Dancing; her teachers were…
Before you read on, make sure to check out Part 1 of Tracy's story. In Part 1, Tracy discusses the symptoms that led her to pursue a diagnosis and the multi-year diagnostic…
Lauren Bruccoleri and her husband Matthew weren’t initially planning on having their son Grayson. But when Lauren found out that she was pregnant, she was overjoyed. However, Lauren and Matthew…
When Kandise MacLeod was twelve years old, she began noticing various growths and tumors popping up on her bones. These sometimes caused pain or discomfort; in one case, Kandise even…
Before you read on, make sure to check out Part 1 of our interview with Christina ("Chris") Coates. In Part 1, we discussed Chris' Cavernous Malformation, surgery, and diagnostic journey to hypertrophic…
In 2018, Libby Porter welcomed her first child into the world. Her family was thrilled, especially her father John, who was so excited to have a granddaughter. But things…
Christina (“Chris”) Coates has lived a full, joyous, and fulfilling life. The Arizona native has built something beautiful: a family with two daughters, two cats, two dogs, and a loving…
This week the family of actor Bruce Willis announced that he received a diagnosis of frontotemporal dementia (FTD), a rare disease that causes behavioral changes, language, speech, and memory…
Ten years ago, Tracy Kyttle moved from New England to the DC Metro Area to pursue a career in education leadership. She loved the area’s duality: its proximity to nature…
Before you read on, make sure to check out Part 1 of Laura's story. In Part 1, Laura shares the diagnostic journey, why her family is so rare, and what Carpenter syndrome…
On the field, Running Back (RB) Tevin Coleman has done some amazing things. He has played in 94 games, gained 3,319 rushing yards, and scored 25 touchdowns. Off the…
Before you read on, make sure to check out Part 1 of Savannah's story. In Part 1, Savannah's mom Lacey shared the diagnostic journey that led to Savannah's diagnoses: EoE, LGS, and…
For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…
Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…
Before you read on, make sure to check out Part 1 of Sarah's story. In Part 1, Sarah discusses the traumatic (and life-threatening!) odyssey that led to her eventual Addison's disease diagnosis…
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