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Candice Neblett

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 advocates for HD and JHD and volunteers her time for the mission of the organization.

BS: Technical Education/Industry Training at University of Florida

AS: Business Management, Marketing, Administration at Seminole State 

Lead Trainer:

BioPlus Specialty Pharmacy

- Orlando, Florida

Leanne Delong

In Nova Scotia, Leanne Delong grew up in a household with her grandmother, who was in the last stages of Huntington's Disease. From a young age she was aware of the disease and surrounded by the disease, and when her grandmother had to be put into a nursing home. Currently, she is watching her mother show the later stages of the disease. Leanne has spent the last five years in Alberta trying to get a hold of her own health and grasp what the early stages of Huntington's feels like and how to deal with it mentally. Leanne was tested for HD in 2008, and her CAG repeat is 41. At the present time, she exhibits the very early stages of the emotional, mental and cognitive effects of the disease. Right now, she continues to have a career as a journalist and what keeps her going every day is raising her six-year-old daughter.

Alberta, Canada

Ginnievive Patch

Ginnievive Patch (alias) is a registered nurse, advocate, caregiver and author for Huntington's disease. She is a California native and has three grown son's, two gene positive, one at risk and a grandchild at risk.


She was the caregiver for her Mother in law, end stages of HD and currently cares for her ex-husband who has HD. She has worked in various specialties including lab, general surgery, family practice, pediatrics, oncology, psychology, and for over a decade in aesthetics and HD/ Jhd advocacy. Author of Caregiver book:

"I Fight for Understanding, 31 days of coping with Huntington's disease" and co-author for the Volume Two of Life Interrupted. In the past, she ran the support group in Springfield, MO. Her mission is to support caregivers and help families stay together.​

- Weldon Spring, MO

James Valvano

James has over twenty years experience in mental health as a Residential Counselor for Catholic Charities, OARC, and Spectrum Community Services. He has worked with individuals with developmental disabilities: MR, schizophrenia, spina bifida, autism, down syndrome. James was diagnosed with Huntington's disease in 2009, and soon after, he founded He is also an author of two books. 


Associate of HSG

European HD network EHDN

Catholic Charities (NY)

Program Manager - OARC

Group Home Management 

AMAP Certified       

ABAC via Rollins College (FL)


- Saint Cloud, Florida

Cindy Moore

Cindy is a full-time caregiver for her daughter Erin Wade who has JHD.  Cindy has been advocating for this disease for over a decade.



Cindy started with the "Pie in The Face" challenge across Canada.


Cindy was instrumental in lighting up both the Canadian and the American Falls for HD/JHD awareness.





-Brockville, ON. Canada

Kevin Jess

Kevin Jess has been married for 35 years and has three children. Kevin and his wife Sheila also owned and operated a Home for Special Care. Kevin's wife has Huntington's disease for the last sixteen years, His children at risk for the disease. Kevin has been active in promoting awareness of HD and JHD for several years through his writing as a journalist for Digital Journal as well as participating at speaking engagements at Acadia University in Wolfville,



- Nova Scotia, Canada

Dr. Herwig Lange

Dr. Lange is a Neuropsychologist with decades of experience working with HD/JHD patients.


George Huntington Institute

European HD network EHDN

HD research group of the World Federation of Neurology 

Associate of HSG


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


- Münster, Germany

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