"The Huntington's Disease Project: Removing the Mask"
Louise Vetter - HDSA CEO
“At HDSA, family is everything, and we are committed to helping families have access to the multitude of resources that can help them navigate the complexities of managing HD,” said Louise Vetter, Chief Executive Officer at HDSA. “Films like The Huntington’s Disease Project: Removing the Mask are important tools in building awareness and understanding of HD, and we are grateful for the opportunity to make this film available in partnership with WeHaveAFace.org .”
To request a DVD for an upcoming viewing at your local HDSA support group, please contact an HDSA representative to coordinate the date of the screening and confirm the required social worker involvement.
View the HDSA Press Release
On June 4, 2016, James Valvano (Founder/President) of WeHaveAFace.org received the HDSA Marjorie Guthrie Award.
Dr. Jan Nolta
“Brilliant filmmaker James Valvano has created, “The Huntington’s Disease Project: Removing the Mask”, which deals with “taboo” topics related to the disease that others have been afraid to discuss. This is a truly gripping documentary film that every health care professional should see in order to help them truly understand HD. Anyone who has HD in their family should watch it, to know that they are not alone, and to be better atuned to the symptoms that are hallmarks of the disease. Everyone else should watch it, to raise awareness and to help those suffering from it. This is a disease that rips families apart, can lead to emotional and financial ruin, and can take the lives of incredible people far too young. In this amazing film you will hear about HD from those who are most affected- from the patients and their loved ones. Their stories are woven together by talented filmmaker James Valvano, who has galvanized the community through his online presence and tireless advocacy. It is a powerful, heart-wrenching, and beautiful film.” - Dr. Jan Nolta
Jimmy Pollard of CHDI Foundation
"I tip my hat to you for making your vision come true and all the sticktoitiveness it had to take to make it a reality. I know it was a labor of love for you but, Jesus, all the labor it must’ve taken…well done. It’s always poignant for me to watch folks tell their stories. I’ve heard a lot of them over the years. But it never becomes “the same old story”…never! People are touched so deeply in so many ways, aren’t they? Wow. Well done, James!" - Jimmy Pollard
Dr. Herwig Lange MD
George Huntington Institute - Münster Germany. European HD network EHDN, HD research group of the World Federation of Neurology, associate of HSG
"Thank you for giving me access to the film. You present very impressive people. This agrees with my experience of working for HD families for more than 30 years by now. Some of my best friends are members of HD families. My experience taught me very early, that IGNORANCE turns HD into a horrifying disease. Ignorance of physicians and institutions - not knowing HD or even worse, being misinformed! Examples are presented in the film. Misdiagnoses, false treatments, denial of legal rights for support - plenty examples in the film. Forcing long waiting times on HD families before a clinical or genetic diagnosis is given - unacceptable! The DNA can be analyzed in 5 days! So increasing knowledge and awareness of HD is vital - and your work is a tremendous contribution to that. I really enjoyed watching the film - so much like what I have seen and heard in my service for HD families. Moving stories, remarkable people. Chapeau bas for all of them. The music is wonderful; the visual presentation could not be better." Dr. Herwig Lange MD. (George Huntington Institute Münster, Germany European HD network EHDN, HD research group of the World Federation of Neurology, associate of HSG)
*We are blesses to have Dr. Herwig Lange as a Medical Advisor for WeHaveAFace.org Inc.
Alan Fernandez - Associate Director Genetics Policy Institute (GPI) / Regenerative Medicine Foundation World Stem Cell Summit
"The Huntington's Disease Project: Removing the Mask documentary so pointedly evidences the massively destructive effect of what’s currently an incurable disease. There’s an ambivalence by many in society for the plight of patients, their family, friends and loved ones for many diseases. James Valvano’s documentary is an extremely powerful view to the world of Huntington’s disease, its effect to those afflicted and those caring for them. Raising global awareness of Huntington’s disease is imperative. It’s our civic and moral duty to share our voices in support for all afflicted, as we all mobilize to harness medical solutions that can alleviate human suffering and financial burden to families. James' documentary so clearly delivers many powerful messages that serve to further my already deep commitment to the Huntington’s community and our collective search for cures." - Alan Fernandez: Associate Director Genetics Policy Institute (GPI) / Regenerative Medicine Foundation World Stem Cell Summit
Carol Kennedy - RGN, RDSA, RM, IV.
This film is just brilliant! As a medical professional I believe that this documentary must be seen by every medical student, counselor, and medical professional around the world. This documentary will bring upon the necessary understand of all properties of Huntington's disease. We must have this documentary here in the United Kingdom.
*We are blessed to have Carol Kennedy as a Medical Advisor for WeHaveAFace.org Inc.
Dr. Peg Nopoulos
“James Valvano has crafted a film that is visually beautiful, with content that is thorough and bold. Important topics such as violence, suicide and end of life issues are addressed in an open, yet sensitive fashion. This is refreshing, given that although these are issues that may be of upmost importance, they are often not addressed in the forthright manner done in this film. All members of the HD community will benefit from this film, and all who worked to make it happen should be congratulated.” - Dr. Peg Nopoulos
Sorcha McGuinness (CEO) HDANI - Huntington's Disease Association of Northern Ireland
"I was really impressed with the production and the scope of issues and experiences covered is fantastic. The combination of research, medical data and personal experience is so well done. The film doesn't duck away from the ethical and moral issues faced by families or the practical realities of care and financial security. This is an excellent learning resource."
- Sorcha McGuinness (Director) Huntingtons Disease Association Northern Ireland (HDANI)
Katie Jackson - President/CEO of Help4HD-International Inc.
"I think The Huntington’s Disease Film Project is very educational. It was fantastic to see so many Huntington’s disease patients and caregivers come together to tell their stories. I commend all the brave individuals that had the courage to come out and share the raw truth of their experiences living with Huntington’s disease. It was truly touching and took me on a roller coaster of emotions. James Valvano-Torrington did an amazing job tying all the stories together and producing a great Huntington’s disease awareness piece. Bravo!"
Katie Jackson - President/CEO - Help 4 HD International Inc.
Angèle Bénard RSW/TSI - Director of Family Services - Huntington Society of Canada
"I have had the opportunity to view the documentary and appreciate the portrayal of the impact of the psychiatric symptoms of HD on not only the person living with the illness, but also the entire family. The openness of families sharing their lived experience is powerful. I also appreciated the education piece around minorities and how they have the additional layers to fight in order to get the diagnosis and services needed.
The unfortunate piece, is that in Canada, people still face discrimination based on their genetic information, so many still feel the need to keep ‘’their mask’’ as they may be denied insurance and employment opportunities. The HSC is working in conjunction with the Genetic Fairness Coalition to change this; Bill S201 has been tabled and will discussed in the Canadian Senate in January 2016. The hope that once Canada protects one’s genetic information, more people will be able ‘’to remove the mask’’ of HD." - Angèle Bénard RSW/TSI
Michelle Maier (Mgr., CNS Therapy Area Dev) TEVA Pharmaceuticals
"I think it is very well suited to educate those that are not familiar with HD and all of the challenges that people and their caregivers with HD face. It is very impressive that you did this production on your own. My favorite part of the film though was your family. I think you could have done half a movie on your history and their experiences. To hear your mom talk about your dad, and all of you (8!), and the grandkids, and great-grandkids…heightens the sense of urgency to find treatments and of course a cure.” - Michelle Maier (Mgr., CNS Therapy Area Dev) TEVA Pharmaceuticals
Kristen Powers - HOPES
"Thank you for allowing us to view your film. It clearly shows that you are passionate when it comes to educating the world about Huntington's disease. Your enthusiasm and support for others affected by this disease is laudable. (We also greatly enjoyed the HOPES citation shout out!)
We wish you the best of luck with your film."
- Kristen Powers, Student Researcher