WeHaveAFace understands the need to discuss sensitive subject matter and topics pertaining to Huntington's and Juvenile Huntington's disease. It is our responsibility to "push the envelope" by hosting shows with sensitive topics such as suicide, sexuality/sexual promiscuity, alcoholism, aggression, behaviors, and so much more. We must continue to openly talk about all aspects of this disease.
The decision to broaden our organization internationally has provided us with a brilliant multicultural insight into our HD/JHD patients, caregivers, and medical professionals in other regions.
WeHaveAVoice Radio is blessed to have the guidance and medical insights of Dr. Herwig Lange (George Huntington Institute, Münster Germany). Dr. Lange has joined us as our Medical Advisor and has made it a priority to help our international Huntington's community.
WeHaveAVoice Radio is now broadcast via iHeartRadio, with the potential reach of over 70 million registered users! It is time to broaden awareness of this disease - globally!
"WeHaveAVoice Radio" is owned and operated by WeHaveAFace.org
WeHaveAFace.org and our Senior Medical Advisor, Dr. Herwig Lange of the George Huntington Institute of Germany are pleased to offer a professional, secure, and robust, telemedicine platform to provide free services to our population. Patients and caregivers can now participate in a one-on-one session from the comfort of their homes. Using a computer, tablet, or cell phone, patients, and caregivers can talk to medical professionals for support, advice, and feedback on the following: treatment, behavior problems, and psychological issues in acute situations.
This free service should be requested when the patient's medical professional is not available. In crisis situations, always contact your medical professional directly or seek emergency services immediately.
Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. She received her Ph.D. in Human Genetics from Johns Hopkins School of Medicine and completed her postdoctoral training in Bioethics at Mayo Clinic. Dr. Finn has devoted a large part of her career to researching whether, when, and how to communicate about genetic conditions and health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best to communicate with kids. Dr. Finn is passionate about normalizing and embracing the uniqueness and diversity of the human condition, and helping parents, family members, teachers, and health providers navigate talking with kids about difficult topics.
1-on-1 Peer Support Services
In August 2020, WeHaveAFace launched this new program that will facilitate phone calls, virtual video calls, and even text message supports for our Huntington's patients and families.
Director of Communications, Jen Almeida is available for people with HD, their caregivers, and their families to have a safe place to talk. Jen will provide support, education, information, and resources to community members who seek this private service. This service is free to all HD/JHD patients, caregivers, and families.
Hospice and Palliative Care Resources
WeHaveAFace launched this new program that will facilitate hospice and palliative care supports and resources for our Huntington's patients and families.
Director of Hospice and Palliative Care Resources, Deborah Johnston, has been caring for individuals with disabilities for over ten years. Deborah lost her mother to Huntington's Disease in 2011 at the age of seventy-two. Deborah was her caregiver and advocate for over ten years. Deborah currently works for Bayada Hospice as an LNA/CHPNA and also cares for people with other types of neurodegenerative diseases. Deborah is a support group leader/facilitator for HD and started the Facebook group Huntington's Disease Support Group For Everyone. Deborah has been an advocate for Huntington's Disease since her mother was officially diagnosed in 2009.
Deborah is available to help our Huntington's community with questions or concerns regarding hospice and palliative care resources and placement. She will also work with our educational partners to better assist families. This service is free to all HD/JHD patients, caregivers, and families.
Early Childhood Education at Becker College
Special Needs Children
LNA: Licensed Nursing Assistant
CHPNA: Certified Hospice Palliative Nursing Assistant
The Purple Road
Since the release of our first documentary -
"The Huntington's Disease Project: Removing the Mask," many have asked us, "What is next?"
With the global success of our first documentary, we are pleased to bring another film to the international stage. We are confident that through truth, love, sensitivity, and professionalism, "The Purple Road" will bring Juvenile Huntington's disease to the forefront - globally. WeHaveAFace understands how to produce such films, and through years of experience as a social networking and media-driven organization, we look forward to broadening educational awareness of this disease.
The aim of our film was to create an international Juvenile Huntington's disease documentary. We are pleased to introduce: "The Purple Road"
WeHaveAFace began filming "The Purple Road" in Brockville, Ontario, Canada. We then traveled to the United Kingdom and Germany to continue the production. The success of this documentary was simply amazing. Please follow the link below for more information.
In June 2017, WeHaveAFace.org began to construct a unique platform to provide education for our international Huntington's and Juvenile Huntington's patients and caregivers, as well as professionals who are unaware of what this disease is. Through in-person conversations, support group meetings, and online surveys, the feedback from our HD/JHD community brought us to create our HD3 training program. All of us at WeHaveAFace.org: USA, Canada, UK, and Germany, have decades of experience working for group homes, nursing homes, hospice, day-training facilities, and hospitals. We have first-hand experience working for individuals with diseases and disabilities.
WeHaveAFace.org has produced a robust, interactive, multimedia-based training. Through in-person conversations, support group meetings, and online surveys, the feedback from our HD/JHD community brought us to create our HD3 training program.
What is HD3?
A 3 Tiered Approach!
HD1- The Huntington's patient: newly diagnosed, and early-to-mid-stage.
HD3- Nurses, CNA's, social workers, group home and nursing home staff (unfamiliar with Huntington's and Juvenile Huntington's disease)
*The HD3 Training was piloted in the UK - Spring 2017!*
HD1 & HD2 - Certificate of Completion
HD3 - Accredited
Since the 2017 update of our WeHaveAFace International Mobile App., we have over 100,000 active users - globally! WeHaveAFace is the premier multimedia advocacy organization for Huntington's and Juvenile Huntington's Disease.
Education - Information - Resources!
WeHaveAFace Downloadable Documents!
HDSA - HD Trial Finder!
The Unity Project: connecting patients and families with HD/JHD organizations
PLOS - Downloadable Algorithms documents for your doctors!
Educational Partnering HD/JHD Organizations!
Online Support Groups
MyID! Medical Alerts!
Organizations 4 HD/JHD - *Contact us to be added to the mobile App!
HD Bloggers - *Are you a Blogger for HD/JHD? Contact us and we will add your Blog!
WeHaveAFace believes it is imperative that our Huntington's and Juvenile Huntington's patients and families receive as many resources as possible.
If you have an additional resource you wish for us to list, please email us directly through the app!
"WeHaveAFace" App is owned and operated by WeHaveAFace.org
Copyright - 2017 - Registered via Android and iOS markets.
The Technological Tool Kit!
Educating: Police - Fire Rescue - EMS - Public
Keeping our HD/JHD loved ones safe!
We are official partners of MyID! We have joined efforts to provide a low-cost Medical ID Alert Bracelet - from ENDEVR creator of these amazing safety alerts! As partners of ENDEVR, the international Huntington's community can receive this discount only through the links below. These bracelets will facilitate a rapid response from EMS, Police, Fire Rescue workers, and the general public, in the case of an emergency! Unlike other bracelets or alerts that come with inscribed information, these MyID! Medical Alerts come with an electronic profile that can be updated on the fly with current information! No need to change anything on the bracelet!
MyID Hive Medical ID Bracelet
100% of proceeds from purchases of these MyID! Alerts are held at ENDEVR as a credit, which will allow WeHaveAFace.org to provide these products to HD/JHD community members who are unable to purchase them.
WeHaveAFace.org has been tackling the most sensitive subject matter pertaining to Huntington's and Juvenile Huntington's disease for over a decade. We believe it is vital to our mission to discuss the toughest of questions which even today, are considered taboo. Within the program, there are five comments/questions we have received from our international community. Privacy is paramount! We receive these questions/comments anonymously, and your feedback, experiences, and opinions will also be anonymous.
Our friends, Jen Almeida and Crystal Martin Zachary, from the Facebook group: Huntington's Disease Education & Awareness Group work diligently each day to provide accurate education, information, and resources to our community. Request to join the group to participate!
The Huntington's Poetry Project: Blue and Purple
In January 2017, WeHaveAFace.org published two poetry books:
"The Huntington's Poetry Project: Blue and Purple" Volume 1 and 2. The poetry book consists of poems from our international Huntington's and Juvenile Huntington's disease. Submit your poem to be included in Volume 3.
Join the Movement!
WeHaveAFace is growing substantially!
Let us know if you would like to become a WeHaveAFace Regional Advocate!
Together we can help so many!