Community Spotlight: Andiamo

“Andiamo is a social venture creating a new user-centred children’s orthotics service. Our aim is to drastically reduce wait times from 13 weeks to 48 hours, by using 3D scanning and printing technology.”

U.R. Our Hope

U.R. Our Hope is a nonprofit organization that primarily supports those seeking diagnosis or those diagnosed with a rare condition. U.R. Our Hope is working with “Undiagnosed: Medical Refugees” to highlight the challenges faced by those without an official diagnosis. CNS Foundation spoke with U.R. Our Hope’s Medical Liaison Mary Elizabeth Parker to learn more about this organization.

Hydranencephaly Awareness Month

June 2014 marks the second annual Hydranencephaly Awareness Month!

World Science Festival

The 2014 World Science Festival is taking place in New York City May 28- June 1. Hosted by the Science Festival Foundation, the goal of the World Science Festival is “to cultivate a general public informed by science, inspired by its wonder, convinced of its value, and prepared to engage with its implications for the future.”

Undiagnosed: Medical Refugees

Undiagnosed: Medical Refugees is a film that highlights the challenges faced by those without an official diagnosis. Click Read More to see the trailer for the film.

Perlstein Lab

Ethan Perlstein, PhD, is a scientific researcher using crowdfunding to establish his own laboratory in San Francisco. Perlstein Lab, with the motto “Leave No Mutation Behind,” will focus on the development of drugs to treat Lysosomal Storage Diseases in a personalized manner.

Loving Healing Press

Loving Healing Press publishes books revolving around self-help, personal growth, trauma recovery, and overcoming physical disabilities. Many of the books geared towards children address issues that are relevant to the CNS Foundation community.

National Cerebral Palsy Awareness Month

March is National Cerebral Palsy Awareness Month, and March 25th is National Cerebral Palsy Awareness Day. CNS Foundation spoke with Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy to learn more about Cerebral Palsy Awareness events taking place throughout the month.

Feeding Tube Awareness Week®

Feeding Tube Awareness Week® was created the Feeding Tube Awareness Foundation to promote “the positive benefits of feeding tubes as a life-saving medical intervention.” The goals of Feeding Tube Awareness Week® are raising awareness of the reasons why children are tube fed, challenges that feeding tube families face, and what daily life is like for children that are tube fed.

International Angelman Day

International Angelman Day is a multi-national awareness raising event held on February 15th of each year. With over thirty nonprofit organizations participating worldwide, the purpose of International Angelman Day is to raise awareness of Angelman Syndrome, encourage fundraising, promote research, and serve as an in memoriam.