WeHaveAFace org Inc.
#YouAreLoved
Programs and results
What we aim to solve
WeHaveAFace.org began its mission due to the lack of supports, education, information, and resources for our population. Too many of our patients and caregivers were not receiving these vital supports. WeHaveAFace is comprised of individuals directly affected by Huntington's and Juvenile Huntington's disease. Through our direct experiences, we are able to help our community.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
HD-3
In June 2017, WeHaveAFace 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. All of us at WeHaveAFace: USA, Canada, UK, and Germany, have decades of experience working in group homes, nursing homes, hospice, day-training facilities, and hospitals. We have first-hand experience working with individuals with diseases and disabilities.
WeHaveAFace.org has produced a robust, interactive, multimedia-based training for our patients, caregivers, and medical professionals.
A 3-Tiered Approach!
HD1- The Huntington's patient: newly diagnosed, and early-to-mid-stage.
HD2- Caregivers/families
HD3- Nurses, CNA's, social workers, group home and nursing home staff (unfamiliar with Huntington's and Juvenile Huntington's disease).
*The HD3 Training will launch in the UK - Spring 2018*
HD1 & HD2 (Tiers) - Certificate of Completion
HD3 (Tier) - Accredited (Skills for Care)
Carol Kennedy: (RGN, RDSA, RM, IV.), Vice President of WeHaveAFace England and Wales leads the HD3 Training Package in the UK.
Candice Neblett: (BS of Technical Education and Industry Training at University of Florida – AS of Business Management, Marketing, Administration at Seminole State College) leads the HD3 Training Package in the United States.
Dr. Herwig Lange: (Senior Medical Advisor for WHAF) provides oversight and approval for the training program.
Additional information: www.WeHaveAFace.org/Programs
WeHaveAFace - Mobile Application
The WeHaveAFace mobile application was created with the Huntington's and Juvenile Huntington's patient and caregiver in mind!
Education - Information - Resources!
HSG Clinical Trials
World Stem Cell Summit 2016! Stay Updated!
HDSA - CoE's: Centers of Excellence / Locate Resources / HDTrialFinder!
HDBuzz Articles
HDDW - Downloadable documents for your doctors!
Online Support Groups
Organizations 4 HD/JHD - Contact us! Join the mobile App!
HD Bloggers - Are you a Blogger for HD/JHD? Contact us, and we will add your Blog!
WeHaveAFace.org SHOP!
Much more!
This free App provides the user with education, resources, and information for an "on the go" approach to staying connected! Currently, there are more than 25,000 active daily users. Visit your Apple or Android markets and download it today or: www.WeHaveAFace.org/Application
WeHaveAVoice - Radio
WeHaveAVoice Radio –
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 talk openly about all aspects of this disease.
iHeartRadio: WeHaveAVoice Radio broadcasts via iHeartRadio, with the potential reach of over 70 million registered users.
In 2020, WeHaveAVoice Radio will begin hosting shows in the following languages: English - German - Spanish*
Additional Information: www.WeHaveAFace.org/Radio
WeHaveAFace TV
It is to our advantage that during these trying times, people are utilizing many video chat apps to communicate with friends and family. Each of us at WeHaveAFace has already been doing that every day, whether it is to hold group meetings or to broadcast a radio show. WHAF is an international organization, and harnessing these technologies has made it possible to connect with our team in various parts of the world. It is with great pleasure to announce that WeHaveAFace is launching an online television show that will play off this same atmosphere. We will be bringing you broadcast quality, multi-cam views with various topics and amazing guests. In late 2018, WHAF announced these plans to launch this program platform, however, it was not possible to bring this to fruition until now. Visit: www.WeHaveAFace.org/TV for more information.
MyID! Medical Alert Bracelets
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. 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! We aim to help all disease communities, including Huntington's Disease, MS, ALS, Dementia, Diabetes, Lupus, and so many more!
Where we work
Awards
HDSA - Marjorie Guthrie Award received by Founder/President James Valvano of WeHaveAFace 2016
Achievement Award
The Huntington's Disease Project: Removing the Mask: Best Feature Documentary (6), and Documentary Selections (35) 2015
Achievement Award
The Purple Road - Juvenile Huntington's Disease Documentary: Best Director 2018
Achievement Award
The Purple Road - Juvenile Huntington's Disease Documentary: Finalist at AltFF Alternative Film Festival 2018
Achievement Award
Leadership and Compassion 2020
University of California Irvine - HDCare.org
External reviews

Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of new advocates recruited
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
WeHaveAFace TV
Type of Metric
Context - describing the issue we work on
Direction of Success
Increasing
Context Notes
WeHaveAFace.org has grown substantially since 2015. Our reach: USA, Canada, England and Wales, Germany, are unpaid, volunteer-only advocates for Huntington's disease.
Number of requests for advocate products or information, including downloads or page views of online material
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
WeHaveAFace TV
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
WeHaveAFace.org harnesses social networking on a global level. Our reach via various social media platforms has surpassed every Huntington's nonprofit organization - globally.
Number of media partnerships developed
This metric is no longer tracked.Totals By Year
Population(s) Served
Economically disadvantaged people, People with diseases and illnesses, Substance abusers
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
WeHaveAFace.org and the Delaware Media Group have partnered to offer the first Huntington's disease magazine for our population. review our programs: www.WeHaveAFace.org/Programs
Number of groups/individuals benefiting from tools/resources/education materials provided
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
WeHaveAFace TV
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
In 2020, we launched WeHaveAFace TV which is an international show discussing topics directly related to Huntington's disease. We saw a significant increase in our programs since this release.
Dollars donated to support advocacy efforts
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
In 2020, WeHaveAFace struggled to raise funds to help our community via our HD Assistance Fund. However, we were still able to provide support.
Number of grants and research funding awarded to the institution
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
In 2020, WeHaveAFace did as much as we could to battle the obstacles which came with COVID. We were able to broaden awareness and support our community. We hope for a better 2021.
Number of new programs/program sites
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
WeHaveAFace TV
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
WeHaveAFace.org invites you to view our program suite: www.WeHaveAFace.org/Programs
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Since we began our mission to broaden awareness of Huntington's and Juvenile Huntington's disease in 2009, we have listened to our community. We recognize and understand the efforts of other Huntington's organizations. We comprehend that a single organization cannot assist every need of our population. Our mission was created to fill in gaps of services and programs which currently exist. We must do our part to help our international community.
Ultimately, WeHaveAFace.org wishes to help find a viable treatment or the cure for Huntington's and Juvenile Huntington's disease. Until this happens, we must continue to provide support to our community and educate the general public.
Please visit: www.WeHaveAFace.org for additional information.
What are the organization's key strategies for making this happen?
WeHaveAFace.org has become the premier multimedia advocacy organization for Huntington's disease. By embracing and utilizing various state-of-the-art technologies: international videos, films, radio, mobile application, electronic publications, and mainstream social networks, we will continue to reach our peers in the Huntington's community, as well as educating the general public. This did not happen overnight. We had to remain in the trenches with our people.
Currently, WeHaveAFace.org is the leading nonprofit organization via social media - Twitter, Facebook, YouTube, Vimeo, Instagram, Pinterest and so much more. We worked diligently to connect with our global Huntington's and Juvenile Huntington's disease peers and families.
Simply, we know what our community needs because we are the community. We facilitate programs and resources by consistently connecting with our population. We believe that our success as an organization will continue as long as we listen to the needs of those we serve.
What are the organization's capabilities for doing this?
We take pride in the fact that WeHaveAFace.org is made up of patients and patient advocates. By harnessing and utilizing various state-of-the-art technologies: international videos, films, radio, mobile application, electronic publications, and mainstream social networks, we have connected with a very large sector of our population. We saw that there was a lack of "connectivity" which existed, and over time, we built a significant presence across all social media outlets.
WeHaveAFace.org Social Media Stats Overview:
Facebook: 30,000+ Followers
Facebook: Leading Presence for Huntington's
Facebook: 35 Groups (10,000+ HD/JHD Daily Users)
Twitter: Largest Presence for Huntington's
Twitter: 48,000+ Reach/Followers
Pinterest: Largest Presence for Huntington's
Google+: 650,000+ Posts – International Reach
Instagram: 20,000 Reach/Followers
LinkedIn: 5,000+ Business Connections
Vimeo Professional Film Channel – 30+ Countries Reached
Mobile Application: 100,000+ International Reach
“WeHaveAVoice" Radio: 100+ Shows – iHeartRadio (exposure 70 million
registered users)
SoundCloud: The only HD/JHD Organization Presence (audio feeds of WeHaveAFace Radio have been accepted by this global market – 175 million Active Users)
Documentary: "The Purple Raod"
Documentary:“The Huntington's Disease Project: Removing the Mask"
Best Documentary – Miami, Los Angeles, Oklahoma and many more
Selections: Tampa Bay, Russia, North Carolina and many more!
Please visit: www.WeHaveAFace.org/Film
What have they accomplished so far and what's next?
Although WeHaveAFace.org has helped many of our international peers within the Huntington's community, we still aim to provide more financial assistance. Sadly, Huntington's disease and Juvenile Huntington's disease financially destroy the patient and their families. WeHaveAFace.org knows exactly how this feels because we too are patients and families directly affected by this horrific disease.
The Board of Directors, Advisors, and Advocates of WeHaveAFace.org are unpaid volunteers. The decision to remain as an unpaid, volunteer-only organization was to ensure that our priorities remain focused on allocating 100% of donations to our Huntington's and Juvenile Huntington's community via education and resources. Please review our website programs - www.WeHaveAFace.org/programs
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
It is difficult to find the ongoing funding to support feedback collection
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
WeHaveAFace org Inc.
Board of directorsas of 02/22/2022
James Valvano
WeHaveAFace.org
Term: 2015 -
James Valvano
WeHaveAFace.org Inc.
Crystal Acree Valvano
WeHaveAFace.org Inc.
Candice Neblett
WeHaveAFace.org Inc.
Ian V. Torrington
WeHaveAFace.org Inc.
Toni Gerig
WeHaveAFace.org Inc.
Rosemary Cataldi
WeHaveAFace.org Inc.
James Pulliam
WeHaveAFace.org Inc.
Daniel Medina
WeHaveAFace.org Inc.
Jennifer Almeida
WeHaveAFace.org Inc.
Crystal Zachary
WeHaveAFace.org Inc.
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
Disability
Equity strategies
Last updated: 06/09/2020GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.