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Mom Runs Chicago Marathon to Raise CCHS Awareness
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Mom Runs Chicago Marathon to Raise CCHS Awareness

  • Post author:Jessica Lynn
  • Post published:November 2, 2022
  • Post category:Congenital central hypoventilation syndrome

Laura Brown never planned on running more than one marathon. In 2012, she tackled a marathon as a way to cross an item off of her bucket list. But since…

Continue Reading Mom Runs Chicago Marathon to Raise CCHS Awareness
Raffle Raises Funds for Firefighter with Epithelioid Sarcoma
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Raffle Raises Funds for Firefighter with Epithelioid Sarcoma

  • Post author:Jessica Lynn
  • Post published:November 1, 2022
  • Post category:Epithelioid sarcoma

In January, Harrison Moseby began having shoulder pain that was interfering with his day-to-day life. As a father and a firefighter, Harrison knew that he needed to be functioning as…

Continue Reading Raffle Raises Funds for Firefighter with Epithelioid Sarcoma
Community Supports Firefighter with GBS
source: pixabay.com

Community Supports Firefighter with GBS

  • Post author:Jessica Lynn
  • Post published:September 16, 2022
  • Post category:Guillain Barré syndrome/Guillain Barre Syndrome

Ryan Smith has always been tenacious in pursuing his goals. One of his most important goals? Supporting his family and his community. As a lieutenant with the Stillwater Fire Department,…

Continue Reading Community Supports Firefighter with GBS
Trying to Enjoy Life with Daughter with Zellweger Syndrome
1041483 / Pixabay

Trying to Enjoy Life with Daughter with Zellweger Syndrome

  • Post author:Jessica Lynn
  • Post published:August 12, 2022
  • Post category:Zellweger spectrum syndromes

Unfortunately, doctors and scientists are still learning about Zellweger syndrome, a rare multisystem genetic disorder. But this can be incredibly difficult for families whose children are diagnosed – after all,…

Continue Reading Trying to Enjoy Life with Daughter with Zellweger Syndrome
Help This Young Boy with Phelan-McDermid Syndrome
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Help This Young Boy with Phelan-McDermid Syndrome

  • Post author:Jessica Lynn
  • Post published:August 8, 2022
  • Post category:Phelan-McDermid syndrome

When Mercedes Young found out that she was pregnant with her son Milo, she knew that she would do everything possible to protect and support her son. Milo was born…

Continue Reading Help This Young Boy with Phelan-McDermid Syndrome
Help a Man with Calciphylaxis Gain a Higher Quality of Life

Help a Man with Calciphylaxis Gain a Higher Quality of Life

  • Post author:Jessica Lynn
  • Post published:June 8, 2022
  • Post category:Calciphylaxis

Two years ago, in 2020, life changed for Ian Foster, then 57. At the time, Ian started experiencing health problems and was eventually diagnosed with kidney failure. According to The…

Continue Reading Help a Man with Calciphylaxis Gain a Higher Quality of Life
Help the Wickham Family to Support their Daughter with an Omphalocele
Photo courtesy of Melissa Wickham

Help the Wickham Family to Support their Daughter with an Omphalocele

  • Post author:Jessica Lynn
  • Post published:May 20, 2022
  • Post category:Rare Disease

When David and Melissa Wickham found out that they were expecting, the pair was thrilled. They had already been together for years – it took seven to conceive their daughter,…

Continue Reading Help the Wickham Family to Support their Daughter with an Omphalocele
Community Supports Boy with Biliary Atresia
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Community Supports Boy with Biliary Atresia

  • Post author:Jessica Lynn
  • Post published:April 6, 2022
  • Post category:Biliary Atresia

If your life goes awry, do you trust your community to stand by you? Luckily, for 6th grader Ethan Chandler, his Carterville, Illinois community jumped in to help when he…

Continue Reading Community Supports Boy with Biliary Atresia
Patient Story: Undiagnosed Ovarian Cancer for Years
Hans / Pixabay

Patient Story: Undiagnosed Ovarian Cancer for Years

  • Post author:Kendall Mason
  • Post published:February 2, 2022
  • Post category:Ovarian Cancer

Rare disease patients know what it's like to go without a diagnosis despite enduring symptoms. Doctors often don't recognize the disorders for a number of reasons, whether that's the similarity…

Continue Reading Patient Story: Undiagnosed Ovarian Cancer for Years
Woman with Gastroparesis Fundraises for Gastric Pacemaker
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Woman with Gastroparesis Fundraises for Gastric Pacemaker

  • Post author:Jessica Lynn
  • Post published:January 28, 2022
  • Post category:Gastroparesis

Seven years ago, at just 15 years old, Lauren Blake was diagnosed with gastroparesis. This condition makes it difficult for Lauren to keep down her meals or, really, to eat…

Continue Reading Woman with Gastroparesis Fundraises for Gastric Pacemaker
Fundraiser Supports Father with Ocular Melanoma
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Fundraiser Supports Father with Ocular Melanoma

  • Post author:Jessica Lynn
  • Post published:November 11, 2021
  • Post category:Ocular Melanoma

In 2019, Mike Smith, a father of two, was initially diagnosed with ocular melanoma in his right eye. Shortly after, Mike made the necessary - but difficult - decision to…

Continue Reading Fundraiser Supports Father with Ocular Melanoma
Community Supports “Marvelous Maddie” When Wilms Tumor Returns
Photo by Robina Weermeijer on Unsplash

Community Supports “Marvelous Maddie” When Wilms Tumor Returns

  • Post author:Jessica Lynn
  • Post published:August 30, 2021
  • Post category:Wilms' tumor

Nearly all cases of Wilms tumors, a rare form of pediatric kidney cancer, are diagnosed before a child turns 10 years old. When Maddie Newburn was first diagnosed, she was…

Continue Reading Community Supports “Marvelous Maddie” When Wilms Tumor Returns
Liver Transplant Fundraiser Held for Baby with Alagille Syndrome
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Liver Transplant Fundraiser Held for Baby with Alagille Syndrome

  • Post author:Jessica Lynn
  • Post published:August 27, 2021
  • Post category:Alagille Syndrome

When Karter was first born 14 months ago, his mother Breonna was overjoyed. But she quickly realized a series of upcoming obstacles when, at birth, Karter was diagnosed with Alagille…

Continue Reading Liver Transplant Fundraiser Held for Baby with Alagille Syndrome
Family Needs Help After $10k for Boy’s HLHS Surgery Stolen
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Family Needs Help After $10k for Boy’s HLHS Surgery Stolen

  • Post author:Jessica Lynn
  • Post published:June 15, 2021
  • Post category:hypoplastic left heart syndrome

At just four years old, Gabriel Spiro is facing his 3rd open-heart surgery. You see, Gabriel was born with hypoplastic left heart syndrome (HLHS), a rare and severe congenital heart…

Continue Reading Family Needs Help After $10k for Boy’s HLHS Surgery Stolen
Over $400K Raised to Prevent Eviction of Family Whose Daughter Has CACT
source: pixabay.com

Over $400K Raised to Prevent Eviction of Family Whose Daughter Has CACT

  • Post author:Jessica Lynn
  • Post published:December 16, 2020
  • Post category:Rare Disease

Admittedly, 2020 has been tough for a variety of reasons. One of the greatest? The spread of COVID-19, a novel coronavirus attributed to 72.8 million cases and 1.62 million deaths…

Continue Reading Over $400K Raised to Prevent Eviction of Family Whose Daughter Has CACT
Raising Money to Benefit Siblings with Tay-Sachs Disease
Photo by Jude Beck on Unsplash

Raising Money to Benefit Siblings with Tay-Sachs Disease

  • Post author:Jessica Lynn
  • Post published:June 1, 2020
  • Post category:Tay-Sachs Disease

  Kelly and Rory McElligott, of Highton, Victoria, Australia, have 3 beautiful children: Maggie, Billy, and Alice. But the family was shocked when two of their children, Maggie and Billy,…

Continue Reading Raising Money to Benefit Siblings with Tay-Sachs Disease
Friends of Banner Mazza: Raising Money for a 4-Year-Old with ROHHAD
Skitterphoto / Pixabay

Friends of Banner Mazza: Raising Money for a 4-Year-Old with ROHHAD

  • Post author:Scott Carlson
  • Post published:July 2, 2019
  • Post category:ROHHAD

According to a publication from the Warwick Beacon, friends and family of 4-year-old Banner Mazza are raising money for the boy's medical expenses. Mazza was recently diagnosed with ROHHAD, a…

Continue Reading Friends of Banner Mazza: Raising Money for a 4-Year-Old with ROHHAD
Send Your Holiday Cheer to Cancer Patient
Source: Pixabay

Send Your Holiday Cheer to Cancer Patient

  • Post author:Andres Rovira
  • Post published:November 13, 2017
  • Post category:Neuroblastoma

It's been on ongoing cancerous battle for nine-year-old Jacob Thompson. Ever since he was 5, he's been dueling his rare neuroblastoma. And after the treatment failed, the cancer has spread…

Continue Reading Send Your Holiday Cheer to Cancer Patient
Dystonia Stole Her Passion, But It Couldn’t Steal Her Love

Dystonia Stole Her Passion, But It Couldn’t Steal Her Love

  • Post author:Erica Zahn
  • Post published:December 31, 2015
  • Post category:Dystonia/Rare Disease

Noted Denver saxophonist Clare Church has played with some of the greats, including Tony Bennett, the Temptations, and Dizzy Gillespie, but two years ago something changed. In an interview with CPR.org's…

Continue Reading Dystonia Stole Her Passion, But It Couldn’t Steal Her Love
This Town Completely Blows Man Away with Their Generosity

This Town Completely Blows Man Away with Their Generosity

  • Post author:Winnie Nash
  • Post published:October 23, 2015
  • Post category:Rare Disease/Sarcoidosis

When this Arkansas community rallies, they conquer. TJ Cluck was one of the thousands of people involved in the Joplin Tornado, a devastating EF5 twister that killed 161 people in…

Continue Reading This Town Completely Blows Man Away with Their Generosity
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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