On Tuesday, September 17th 2013, the world changed for the better – just a little bit. It was the day that Bernadette, the first full-length documentary on Charcot Marie Tooth disease, was released. Not only that, but it kicked of with a very special premiere at the ArcLight Cinemas Theatre in Hollywood. With roughly 200 people in attendance (including CMT sufferers from all over the country) and a post screening Q&A session, it proved to be a magical night – ushering in a new burst of hope. Awareness for this disease is key in the ongoing search for a cure and Bernadette is certainly a big step forward in this fight.bernadette-keyart-LR
Bernadette captures the life of Bernadette Scarduzio and her challenges and triumphs living with Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting 1 in 2,500 people or nearly 2.6 million worldwide. It is a degenerative nerve and muscle disorder, which leads the body to deteriorate over time. Filmed over four years, Bernadette documents the physical decline of a young woman in her prime who goes from engaging in sports to depending on a scooter and assistance with the daily necessities of life.
After the viewing, director Josh Taub, Bernadette Scarduzio, HNF founder Allison Moore, and Dr. Glenn Pfeffer of Cedars-Sinai joined together on a panel to address the audience’s questions about CMT and the film itself. To wrap up the evening, all attendees got to mingle with Bernadette and company for a few cocktails in the nearby lounge. Note: Surprise of the evening? Auti Angel and Angela Rockwood of Sundance Channel’s Push Girls fame, came out in support of the project.
Sponsored by The Hereditary Neuropathy Foundation, Bernadette was produced by Run Amuck Productions, LLC. The film has been officially released by Cinema Libre Studio and can be found on Hulu, Amazon, and Amazon Instant.
Watch the movie
Filmmaker Josh Taub documents the physical decline of a young woman in her prime. During the course of the film, Bernadette goes from engaging in sports to depending on a scooter and assistance with the daily necessities of life. When her father, who shared the disease, suddenly passes away, Bernadette resolves to raise herself from suffering in obscurity to become ‘the face’ of CMT.
Traveling With A Disability
We interviewed Bernadette to ask her to share her tips and tricks for traveling with a disability.
Join Brett Gray & Bernadette Scarduzio in their mission to bring accessibility to beaches across the US!
Therma Pool therapy session and demo as they discuss the benefits of aquatic exercise for CMT and more!
Summit Panelist Spotlight: Bernadette Scarduzio
Bernadette Scarduzio – a CMT patient and advocate! I reside in Drexel Hill, PA with my 2 dogs.
Arclight Presents…BERNADETTE (NYR) September 17, 2013
Cast: Bernadette Scarduzio
Bernadette Scarduzio was born with the most common inherited disease that no one has ever heard of: Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting 1 in 2,500 people or nearly 2.6 million worldwide.
BERNADETTE SCARDUZIO: The Face of Charcot-Marie-Tooth Disease
In mid-October 2012, I had the opportunity to interview Bernadette Scarduzio (Bern). She is a lovely young woman who suffers from Charcot-Marie-Tooth
Join Us for a Private Screening of Bernadette: January 29th in New York City
On Wednesday, January 29th, jewelry designer jaKe & anna will be sponsoring the NYC premiere of BERNADETTE at the old time soho Angelika Film Center in Manhattan. 50% of sales from this viewing will go to the Hereditary Neuropathy Foundation (HNF).
Film Release: Bernadette!
The Hereditary Neuropathy Foundation (HNF) is thrilled to announce the completion of the film, “Bernadette.”
New York Times features Voice of CMT
The New York Times recently published an article about those living with Charcot-Marie-Tooth disease.