WeHaveAFace USA and WeHaveAFace England and Wales Retires Charities
Florida, January 16, 2023 – After almost fourteen years of providing services, supports, and recourses for the International Huntington’s community, WeHaveAFace.org USA and England and Wales, will be closing on March 1, 2023. WeHaveAFace Canada, and support chapters: WeHaveAFace New Zealand and Germany, will remain open to provide services and supports to the Huntington’s and Juvenile Huntington’s community.
WeHaveAFace.org was created by Huntington’s disease patients and families in 2009. At that time in history, a small group of individuals decided to make a difference in the lives of their peers to find a viable treatment or a cure for Huntington’s disease. After two years of advocacy, the team grew into a diverse international family and maintained the same mission – to broaden international awareness of Huntington’s and Juvenile Huntington’s disease. Adhering to the mission, which was set in stone.
WeHaveAFace.org became the only international, unpaid, volunteer-only, patient/caregiver-run charity for Huntington’s disease. Throughout the years, WeHaveAFace.org has built nonprofit charities in the USA, Canada, Mexico, England and Wales, with support chapters in Germany and New Zealand. “The last fourteen years of my life have been dedicated to helping my peers in the HD and JHD community. The entire USA team is so proud of our many accomplishments, but most importantly we are blessed to have had the ability to help such an amazing and diverse group of loving people. We have always put our community first and our mission never wavered. It’s now time to focus on family and health matters, but I will always love and support our community.” – James Valvano (Founder of WeHaveAFace.org)
WeHaveAFace.org USA produced two award-winning documentaries: “The Huntington’s Disease Project: Removing the Mask”, and “The Purple Road.” These films were groundbreaking due to subject matter that was once considered taboo. Seen around the world, the documentaries won over forty awards for their content, messaging, and production.
“Our two films and all of our educational videos will continue to remain on YouTube for anyone to view. I truly thank everyone who supported our efforts to bring these documentaries to fruition. I hope that the stories within the films help as many of our patients and families as possible.” – James Valvano (Founder of WeHaveAFace.org)
Since 2017, WeHaveAFace.org USA has received the GuideStar Platinum recognition for transparency. The aim of the organization is to adhere to IRS 501(c)(3) rules to provide all documentation on its website for open review. WeHaveAFace.org also raised the bar by creating Project CHANGE; as per the project’s goal, individuals who suffer from the emotional, psychiatric, and cognitive symptoms of Huntington’s disease should receive a diagnosis of when it is needed for supports and services.
“The amount of time and energy each of us put into Project CHANGE has made a difference and I have faith that we obtained the necessary data and supports for a major change to take place for the betterment of our patients and families. I truly thank all of our educational partners and HD organizations for their support and efforts. I must believe that our medical professionals will listen to patients and families and make this monumental change.” – James Valvano (Founder of WeHaveAFace.org)
WeHaveAFace.org has dedicated hundreds of hours to help fill trials and studies via the Huntington Study Group (HSG) and Enroll HD (sponsored by the CHDI Foundation). It has always been a priority for the organization to ensure that patients are aware of studies and trials to advance research. This will not change, and WeHaveAFace Canada and support chapters will continue to provide education, information, and support for trials and studies.
WeHaveAFace.org provides platforms such as: WeHaveAFace TV, WeHaveAVoice Radio, The Unity Project, The Poetry Project, HD3 Training (Accredited Training Certification), and other programs and supports.
“We had a brilliant time working with the Huntington’s community and families in England and Wales. We utilized the HD3 training since 2017, and we educated and provided certificates to hundreds of medical staff in care facilities throughout the region. Our goal was to broaden awareness of this disease and we truly succeeded. However, it is time for us to move onward in our lives, but we love and cherish the HD and JHD community.” – Carol Kennedy (President of WeHaveAFace England and Wales)
WeHaveAFace.org will begin to make the appropriate changes to its website and continue to provide services and supports in the locations mentioned. Visit WeHaveAFace.org for more information.