When Valentina Rodriguez and Jason Gutierrez learned that their child would be born with spina bifida, they jumped into action. Neither knew exactly how to help their daughter, not yet—but…
You are invited to join hundreds of thousands of people touched by spina bifida, the most common congenital birth defect causing disability. There is no cure. This is a…
Champlain Valley Union (CVU) High School students are running on a high this season after the school's basketball team clinched its first ever state championship win. The CVU RedHawks…
Did you know that October is Spina Bifida Awareness Month? This month is designed to celebrate those living with spina bifida, spread awareness and education among the general public,…
When they found out that they were having a son, Nash and Callie Horne were thrilled. They even decided to name their son Nash as well. But then an unexpected…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
According to a recent article from UTHealth Houston, a five-year-old suffering from a severe case of spina bifida has brought together a number of doctors to give her the…
Did you know—October is known as Spina Bifida Awareness Month, with October 25 being designated as World Spina Bifida and Hydrocephalus Day? That means, all October long, you can help…
At just 18 weeks old, Ivy Gaines, who was born prematurely, was diagnosed with spina bifida. His parents, Robert and Brittney, have worked tirelessly to ensure that Ivy is receiving…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
In the past, researchers have questioned the exact cause of spina bifida, a neural tube defect in which the spine does not fully close around the developing spinal cord nerves.…
In early January 2021, pharmaceutical company Astellas Pharma Inc. ("Astellas") shared that its New Drug Application (NDA) and supplemental NDA for Myrbetriq (mirabegron) received Priority Review status from the…
According to a story from Newswise, a collaborative research team from the University of California San Diego School of Medicine and the Rady Children's Institute for Genomic Medicine will be…
As reported in CBS News, sisters Izzy and Ailbhe Keane were graced to be born with a natural partner in crime. Their creative flair and eye for style came naturally.…
Dayton Abbott is like many kindergarteners; she loves to tell jokes, play games, and hang out with friends during recess. But her playground at Alexander Elementary School wasn't built for…
Botox Botox was first approved as a treatment for strabismus and blepharospasm, rare eye conditions, in 1989. Now, it is approved for 11 different conditions including cervical dystonia, chronic migraines,…
Mobile County Mobile County has unfortunately become one of the hotspots for COVID-19 in Alabama. But individuals and organizations are working tirelessly to help their community. Individuals Catherine Drake has…
According to a press release from the Mayo Clinic, new research findings show that in-utero neurological surgery for patients with spina bifida is more successful in strengthening brain structure…
As originally reported in Smart Parenting; many families with rare diseases are struggling to keep up with their healthcare regime as new restrictions block families from accessing doctors and normal…
By Natalie Homan from In The Cloud Copy Spina bifida is a condition that appears when a developing baby’s neural tube doesn’t close completely. The most severe form of spina…
According to a story from Chronicle Live, 36 year old Donna Campbell was found unresponsive in her hospital bed on June 22nd, 2019. She was officially pronounced dead the following…
By Rachel Whetstone from In The Cloud Copy When Helisabed Romano was pregnant with her daughter, she got some bad news. The the developing baby had spina bifida, a defect…
Each year just under 1,500 infants are born with spina bifida, a name given to a cluster of malformations that affect the neural tube. Of those 1,500, only 43%…
According to a story from Yahoo! News, Dorothy Dunnington is beginning to wonder if she will ever fully understand the circumstances surrounding the death of her sister Chrissy, who was…
Growing up "Normal" Growing up, Steph Derham always thought she was normal. She says she has her parents to thank for that. Steph is incredibly grateful that her mom and…
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