WeHaveAFace.org USA

WeHaveAFace aims to broaden global awareness of Huntington's disease and Juvenile Huntington's disease.  Our success in increasing awareness and education of this disease will continue to be measured by our ability to embrace and utilize various state-of-the-art technologies: international videos, films, radio shows, mobile applications, electronic publications, accredited training, social media networking, and in 2020 - WeHaveAFace TV. WeHaveAFace will move our mission forward to close gaps in education and services and provide support to our international Huntington's community.  It is also paramount that we educate the general public. WeHaveAFace is the premier international multimedia advocacy organization for Huntington's disease and Juvenile Huntington's disease. The Board of Directors, Advisors, and Advocates of WeHaveAFace 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, resources, and financial needs.  Review our organization here.

Volunteer Board of Directors

James Valvano - Founder

Saint Cloud, Florida

James has over twenty years of experience working with individuals with disabilities. James was diagnosed with Huntington's disease in 2009 and is a care provider for his brother John.  James lost his father from cancer and Huntington's disease in 2012 and lost his brother John in 2016.  There are dozens at risk in his family.

 

HDSA - June 2016 Marjorie Guthrie Award Recipient 

HSG - Huntington Study Group Associate Member

EHDN - European Huntington's Disease Network Member

 

Residential Counselor for Catholic Charities (NY)

Program Manager / Program Training (FL) for the OARC

Regional Manager for ProsoftTraining

Group Home Management (FL) for Spectrum Community Services

AMAP Certified       

Applied Behavior Analysis Certificate via Rollins College (FL)

Ian V. Torrington - President

Saint Cloud, Florida

Ian has worked with individuals with disabilities for over ten years.

Board of Director for OARC - 1998-2001

Group Home Management (FL) for Spectrum Community Services

 

Regular Member of EHDN (European Huntington's Disease Network)

HSG - Huntington Study Group Associate Member 

BS in Computer Science - Jones College (FL)

AS in Data Processing - Jones College (FL)

AMAP Certification

Ian is a care provider for his partner James Valvano.

Daniel Medina - Vice President

Southern, California

Daniel Medina is a dear friend to the international Huntington's and Juvenile Huntington's disease community and is always willing to help our patients, caregivers, and nonprofit organizations. Daniel became actively involved in the HD community when he learned that his younger brother was at risk of inheriting Huntington's Disease.  Since 2013, he has been a champion for HD awareness by organizing HD patient support groups and walks in southern California and served on the Board of HD Care, UC Irvine’s nonprofit HD support group. He also worked closely with WeHaveAFace. He represents the HD/JHD community as an Ambassador with Americans For Cures, an organization in California that promotes and educates the public about the benefits of stem cell research for many diseases. Daniel also works for the Jurupa Unified School District.

Daniel graduated with a BA in Psychology from Argosy University. 

Crystal Acree Valvano - Director of Marketing/Community Relations

Saint Cloud, Florida

Crystal has worked with individuals with disabilities for over five years.  Huntington's disease came into her life when two of her brothers-in-law,  James and John were diagnosed in 2009.  Her father-in-law passed from Huntington's disease, and her husband and child are at risk.  

 

BA Business Management/HR at the University of Central Florida

Minor Hospitality 

AA Business of Valencia College

Management - Walker Mobility (FL)

Osceola County Sheriff's Office

Candice M. Neblett - Director of Education

Jacksonville, Florida

BS of Technical Education and Industry Training at the University of Central Florida

 

AS of Business Management, Marketing, Administration at Seminole State College 

 

Specialty Pharmaceutical Account Manager at AssistRx,  overseeing Pharma and Healthcare clients in leveraging technology to improve speed to therapy and eliminating access barriers.

 

Candice has known the Valvano family for most of her life.  James Valvano has been her father-figure since she was a young child.

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Toni Gerig - Treasurer

Toni has worked with individuals with disabilities for over ten years.  Her brothers - James and John Valvano have Huntington's disease, and her two daughters are at risk.  Toni lost her father from cancer and Huntington's disease as well as her brother John.

 

Group Home Care - Catholic Charities (NY)

Matron of Individuals with disabilities: Jo-Lo (NY)

Rosemary Cataldi - Secretary

Virginia

Rosemary Cataldi has been a lifelong friend of the Valvano family.  Rosemary used to dance professionally with John Valvano (John passed away from HD on July 17, 2016).  Rosemary is best friends with Toni Gerig Valvano who also tested positive for HD in 2017.  Rosemary is dedicated to broadening awareness of this disease.

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Madeline Visciano - Director of Community Events

Saint Cloud, Florida

Madeline works for Osceola County School District and in the process of becoming a certified teacher. Currently, Madeline works in the capacity of a Paraprofessional with autistic children.

Huntington’s Disease and Juvenile Huntington’s Disease came into Madeline’s life when dear, close friends became diagnosed with HD. "Watching them deteriorate and die before my eyes has been devastating and heart-breaking. It is my goal to work with WeHaveAFace to help create global awareness by organizing events to raise money to help find a cure for this horrific disease."

 

BS Business Administration/Marketing University of Central Florida

Kimberly Spears - Director of Patient Advocacy Assistance

Ohio

Kimberly Spears Nedoma has been part of WeHaveAFace since its inception.  Kimberly is known across all social networking for her hard work and dedication to our Huntington's and Juvenile Huntington's disease community.  Kimberly's sister Paula passed away from Huntington's disease, however, Kimberly was still able to tell her sister's story in our award-winning documentary: "The Huntington's Disease Project: Removing the Mask" in 2015.

Crystal Martin Zachary - Director of Regional Advocacy and Community Development

Oklahoma

Crystal has worked with individuals with disabilities for over a decade in Oklahoma. She began her advocacy for Huntington's disease and Juvenile Huntington's disease in 1995 after her father was diagnosed.  Following her diagnosis in 1998, she continued educating her family and community. Crystal broadened her advocacy as soon as social networking began. In 2004, she began administering the largest online support group for Huntington's disease.  

CNA - Certified Nurse’s Aide

Hospice Home Health Certificate 

Oklahoma Department of Veterans Affairs

A veteran of the USA Army

Jennifer Lynn Almeida - Director of Communications, Connecticut 

North East, Connecticut 

Jennifer Lynn Almeida began her advocacy for Huntington's disease and Juvenile Huntington's disease in 2004 after her grandmother was diagnosed. Several years later her mother was diagnosed and in 2018 she herself was formally diagnosed with Huntington’s Disease.  Jen continues to educate and advocate for not only herself but her friends and family she has made on this long and difficult journey.  Jen is the founder of Huntington’s Disease Education and Awareness a Facebook group made for people with HD/JHD and their family and friends to go and find accurate information on Huntington’s Disease.

Jennifer is willing to take calls from patients and caregivers: 9 AM - 9 PM (Weekly)

(860) 292-0643 

Deborah Johnston - Director of Hospice and Palliative Care Resources

Vermont

Deborah 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 72. 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.  This group helps people with HD with anything they need. Deborah has been an advocate for Huntington's Disease since her mother was officially diagnosed in 2009.  Deborah has been avid in fundraising for HD for ten years.

Early Childhood Education at Becker College

Special Needs Children

LNA: Licensed Nursing Assistant

CHPNA: Certified Hospice Palliative Nursing Assistant  

James Pulliam: Events Operations Director

Virginia

James Pulliam has been a friend of the Valvano family for almost a decade.  James Pulliam knew John Valvano (John passed away from HD on July 17, 2016).  James is dedicated to broadening awareness of this disease and helps at all WeHaveAFace USA events. 

James worked for a US Government organization at Portsmouth, Virginia.  He was also an independent contractor and a machinist.  

WHAF - Regional Advocates, USA

 

Michael J. Almeida - Regional Advocate, Connecticut

North East, Connecticut - Regional Advoacte

Michael Almeida has been a Huntington's disease caregiver for over ten years.  Michael helps support and care for his mother-in-law during very difficult times.  Michael is also the husband of (Board Member), Jen Almeida.   Michael loves and supports his wife Jen who was diagnosed with HD in 2018.  Michael is instrumental in broadening awareness of Huntington's disease on a daily basis.

Senior CAD Designer for a National Company - 12 years

Designer Journeyman - 7 years

Amelia C. Valvano - Regional Advocate, Florida

Saint Cloud, Florida

Amelia has worked with individuals with disabilities for over ten years. Her husband Joseph Valvano passed away from cancer and Huntington's disease.  Currently, two of her son's - James and John, have Huntington's disease, and one of her granddaughters. Amelia lives each day with this disease and has children, grandchildren and great-grandchildren at risk.  

 

Matron of Individuals with disabilities: Jo-Lo (NY)

Christine Carlson-Kubik - Regional Advocate, Florida

Saint Cloud, Florida

Christine has been a vital part of the ongoing mission of WeHaveAFace since 2015.  Christine provided her video testimony in "The Huntington's Disease Project: Removing the Mask" to show the world what Huntington's disease does to patients and families.  Christine has also participated in HD studies and trials via the HSG.  Although Christine has Huntington's disease, she is a strong woman and an HD Warrior!

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Volunteer Medical Advisors

 

WHAF Chief Medical Advisor: Herwig W. Lange, MD

Münster, Germany

George Huntington Institute

European HD network EHDN

HD research group of the World Federation of Neurology 

Member of HSG (Huntington Study Group)

We are pleased to have Dr. Herwig Lange as a Medical Advisor for our entire suite of programs. 

herwig.w.lange@t-online.de

More about Dr. Lange

Medical Advisor: Dr. Finn - Mayo Clinic

Baltimore, Maryland