brain – We Are RARE

Sarah Jones Adult Panelist Schizencephaly Convention

By We are RAREMarch 14, 2021No Comments

My Name is Sara Jones, I am 34 year old and I was born with 3 brain malformations Schizencephaly, Polymicrogyria and Pachgyria. My schizencephaly is one small cleft on the right side frontal lobe with two small slits on both sides the occipital...

Virtual convention Dr Joseph Rosado, MD

2014 Schizencephaly Awareness Events, Blog, Events, Research, Schizencephaly Awareness Day, Schizencephaly Community Page, Uncategorized

2014 Schizencephaly Awareness Events Blog Events Research Schizencephaly Awareness Day Schizencephaly Community Page Uncategorized

Virtual convention Dr Joseph Rosado, MD

By We are RAREMarch 01, 2021No Comments

Dr Joseph Rosado, MD is one of the world’s most respected medical authorities on cannabis as plant-based medicine. With over four decades of experience as a healthcare professional, he’s built a career anchored in...

National rare disease day Ruben

2014 Schizencephaly Awareness Events, Blog, Events, Research, Schizencephaly Awareness Day, Schizencephaly Community Page, Uncategorized

2014 Schizencephaly Awareness Events Blog Events Research Schizencephaly Awareness Day Schizencephaly Community Page Uncategorized

National rare disease day Ruben

By We are RAREFebruary 28, 2021No Comments

National rare disease day. Feb 28th marks the 14th national rare disease day. Rubens Story. In 2019 we received a message from a lovely mum-to-be, Rachel, who reached out to us regarding her sons diagnosis of #Schizencephaly. At 34 weeks gestation during...

Blog

Disability Access Discrimination Across the World

By We are RAREJanuary 18, 2021Comments Disabled

Are we headed back when it comes to disability inclusion? We are getting a lot of emails about this direct topic. Tell us your story!

Blog

Disability in America January 2021

By We are RAREJanuary 16, 2021Comments Disabled

Northampton filmmaker probes environmental and public health factors … A little over 30 years ago, the Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush, marking the first major effort to protect people from...

Blog

New Program To Train Doctors On Developmental Disabilities

By We are RAREDecember 17, 2020Comments Disabled

A new effort is underway to better prepare future doctors and other health care professionals to treat people with intellectual and developmental disabilities. The U.S. Department of Health and Human Services’ Administration for Community...

Growing Up Alongside a Sibling With a Disability

Blog

Growing Up Alongside a Sibling With a Disability

By We are RARESeptember 06, 2020Comments Disabled

How does growing up with a special needs sibling change you? When children help with the education of a brother or sister with special needs, the outcomes are often good for both. According to Dr. Milevsky, siblings of children with special...

Blog

COVID-19 kills children with intellectual disabilities at higher rates.

By We are RAREJune 16, 2020Comments Disabled

Several papers have shown how devastating the novel coronavirus has been for the elderly, minorities and people with underlying health conditions, but some researchers point out that studies on individuals with intellectual and developmental disabilities...

Blog Research Schizencephaly Community Page Uncategorized

Agenesis of the corpus callosum

By We are RAREMay 28, 2020Comments Disabled

Agenesis of the corpus callosum (ACC) is one of several disorders of the corpus callosum, the structure that connects the two hemispheres (left and right) of the brain. In ACC the corpus callosum is partially or completely absent. It is caused...

Remembering Charlotte

Blog, Schizencephaly Community Page

Blog Schizencephaly Community Page

Remembering Charlotte

By We are RAREApril 24, 2020Comments Disabled

Charlotte’s Web announced it will be donating $1 million in CBD products to people who rely on CBD for their health to ensure those who are facing COVID-19-related financial hardships have access As many of your now we lost Charlotte during this pandemic...

Homes for the Disabled See a Surge of Covid-19

Blog

Homes for the Disabled See a Surge of Covid-19

By We are RAREApril 09, 2020Comments Disabled

“Forgive me if I get emotional,” Mr. McGuire said in an interview, choking up. “People discount people with disabilities and presume they understand them when they don’t know them. They think their lives are not worth the same as yours or mine,...

Is General Neurology a Dying Specialty?

Blog

Is General Neurology a Dying Specialty?

By We are RAREFebruary 21, 2020Comments Disabled

(In brief) The percentage of US members of the AAN who describe general neurology as their primary subspecialty has gradually declined over the past four years. Experts discuss the reasons behind the trend, what the impact could be on patient care,...

Comedian Brad Williams raises over $30,000 to send bullied 9-year-old to Disneyland

Blog

Comedian Brad Williams raises over $30,000 to send bullied 9-year-old to Disneyland

By We are RAREFebruary 21, 2020Comments Disabled

Comedian Brad Williams, who also has Dwarfism, saw the story, and it hit too close to home. So he decided to do something beautiful by trying to raise $10,000 to help send Quaden and his mother from Australia to Disneyland in California. https://megaphone.upworthy.com/p/brad-williams-quaden-bullied...

Blog

Schizencephaly special books

By We are RAREFebruary 06, 2020Comments Disabled

Emmylou was born missing 40% of her brain and had an additional 10% removed to prevent severe seizures. Her family wants the world to know they love her just the way she is and are proud of Emmylou. Emmylou’s Social Media: https://www.instagram.com/emmylou4you/

Ruby’s Story Age 13, South Wales, UK

Blog

Ruby’s Story Age 13, South Wales, UK

By We are RAREFebruary 06, 2020Comments Disabled

She truly is one of a kind.’ Hi everyone this is my daughter Ruby, she is 13 years old and has a rare brain disorder called Polymicrogyria. She also has a few other conditions too. Ruby was born in 2006. My pregnancy and labour...