WeHaveAFace.org USA

In May 2015, WeHaveAFace.org received its Florida State Incorporation status and became a legal incorporated nonprofit organization.  In September of 2015, we obtained our IRS Letter of Determination - 501(c)(3) status. 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 show, mobile applications, electronic publications, accredited training, and social media networking. 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. WeHaveAFace.org also financially supports  Huntington's and Juvenile Huntington's disease research.

Volunteer Board of Directors

James Valvano - Founder

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.  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

Group Home Management (FL) for Spectrum Community Services

AMAP Certified       

Applied Behavior Analysis Certificate via Rollins College (FL)

James@WeHaveAFace.org

Ian V. Torrington - President

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 and brother-in-law, John Valvano.

Ian@WeHaveAFace.org

Daniel Medina - Vice President

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 for 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.

 

DanielM@WeHaveAFace.org

Crystal Acree Valvano - Director of Marketing/Community Relations

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)

Crystal.Valvano@WeHaveAFace.org

Candice M. Neblett - Director of Education

BS of Technical Education and Industry Training at 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.

 

Candice@WeHaveAFace.org

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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.

 

Group Home Care - Catholic Charities (NY)

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

Toni@WeHaveAFace.org

Rosemary Cataldi - Secretary

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.

Roe@WeHaveAFace.org

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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

 

Madeline@WeHaveAFace.org

James Pulliam: Events Operations Director

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.