Being an Olympic Swimming Legend Doesn’t Ease the Burden of Chronic Inflammatory Demyelinating Polyneuropathy
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Being an Olympic Swimming Legend Doesn’t Ease the Burden of Chronic Inflammatory Demyelinating Polyneuropathy

  After winning the 1998 100m butterfly in Perth, breaking a world record, winning 54 international medals, and becoming the Swimming Hall of Fame inductee in 2022, Michael Klim appeared…

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A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 1)
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A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 1)

Katie Brown, age 15, loves learning Spanish, swinging, and special effects makeup. In the future, she is considering a possible career as a writer or a special effects artist; she…

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A Rare Family: From EoE and POTS to EDS and Intussusception, the Schroeder Family Fights for Awareness (Pt. 2)
Photo courtesy of Pari Schroeder

A Rare Family: From EoE and POTS to EDS and Intussusception, the Schroeder Family Fights for Awareness (Pt. 2)

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…

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Lisa Champions the Importance of Advocacy After Her Daughters’ Shwachman-Diamond Syndrome Diagnoses (Pt. 2)
Photo courtesy of Lisa Superina

Lisa Champions the Importance of Advocacy After Her Daughters’ Shwachman-Diamond Syndrome Diagnoses (Pt. 2)

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…

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A Rare Family: From EoE and POTS to EDS and Intussusception, the Schroeder Family Fights for Awareness (Pt. 1)
Photo courtesy of Pari Schroeder

A Rare Family: From EoE and POTS to EDS and Intussusception, the Schroeder Family Fights for Awareness (Pt. 1)

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…

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Lisa Champions the Importance of Advocacy After Her Daughters’ Shwachman-Diamond Syndrome Diagnoses (Pt. 1)
Photo courtesy of Lisa Superina

Lisa Champions the Importance of Advocacy After Her Daughters’ Shwachman-Diamond Syndrome Diagnoses (Pt. 1)

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…

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One of 50 People Worldwide: Why Kyla is Passionate about Raising Gleich Syndrome Awareness (Pt. 2)
Photo courtesy of Kyla McGaughey

One of 50 People Worldwide: Why Kyla is Passionate about Raising Gleich Syndrome Awareness (Pt. 2)

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…

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A Journey to Self-Empowerment: What Kandise Has Learned from Life with Hereditary Multiple Exostoses (HME) (Pt. 2)
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A Journey to Self-Empowerment: What Kandise Has Learned from Life with Hereditary Multiple Exostoses (HME) (Pt. 2)

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.…

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One of 50 People Worldwide: Why Kyla is Passionate about Raising Gleich Syndrome Awareness (Pt. 1)
Photo courtesy of Kyla McGaughey

One of 50 People Worldwide: Why Kyla is Passionate about Raising Gleich Syndrome Awareness (Pt. 1)

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…

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Family Searches for Donated Breast Milk for Son with Rubinstein-Taybi Syndrome (RTS)
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Family Searches for Donated Breast Milk for Son with Rubinstein-Taybi Syndrome (RTS)

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…

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A Journey to Self-Empowerment: What Kandise Has Learned from Life with Hereditary Multiple Exostoses (HME) (Pt. 1)
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A Journey to Self-Empowerment: What Kandise Has Learned from Life with Hereditary Multiple Exostoses (HME) (Pt. 1)

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…

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Adapting and Overcoming: How Chris Uses her HOD Diagnosis to Connect the Community (Pt. 2)
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Adapting and Overcoming: How Chris Uses her HOD Diagnosis to Connect the Community (Pt. 2)

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…

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Adapting and Overcoming: How Chris Uses her HOD Diagnosis to Connect the Community (Pt. 1)
Photo courtesy of Chris Coates

Adapting and Overcoming: How Chris Uses her HOD Diagnosis to Connect the Community (Pt. 1)

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…

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The Family of Actor Bruce Willis Acknowledges his Diagnosis of Primary Progressive Aphasia
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The Family of Actor Bruce Willis Acknowledges his Diagnosis of Primary Progressive Aphasia

  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…

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