Huntington's Disease Support Information

Section 2 HD Specific

Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
New Hampshire
New Mexico
New York
North Carolina
North Dakota
West Virginia
Washington State
Pennsylvania~Delaware Valley
Rhode Island
South Dakota
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources
 Section 2
Huntington's Disease Specific

The biography of Dr. George Sumner Huntington who wrote the original medical paper on Huntington's Disease.
Information on the Huntington's Disease Society of America (HDSA), including website, contacts, link to The Marker HDSA'smagazine, how to get on HDSA's mailing list  and how you can help Huntington's Disease through your donations.
HDSA National Events Calendar
See what meetings, fund raisers, etc. are happening or are planned in your neck of the woods!  The HDSA calendar is now kept up-to-date with the current month activity popping up. To have an event listed contact the HDSA webmaster at Thankfully, I no longer have to input these events on the individual state pages!
For any one who may wonder what is  being done with all the $$$ donated for Huntington's Disease research, you might just want to check out a few of the areas where those hard earned dollars/
donations have been spent in the past 5 years.
Description of HD from (NIH) and the National  Center for Biotechnology Information (NCBI).  Available in Word
14 Commonly asked questions. Available in Word.
Steven M. Hersch, MD, PhD; H. Diana Rosas, MD   Available in Word
Excellent article: Huntington Disease: eMedicine Journal, September 11 2001,  Vol  2, Number 9
This article by Dr. Shannon is now 5 years old but is still oneof the best consolidated updates I've seen on Huntington'sDisease before or since she presented it!
HDSA's involvement in this Robert Wood Foundation project on assessing the needs for HD families in end of life care. This is a must read to learn what Family Services initiatives are being reviewed for HD.
Concurrent resolution about Huntington's Disease which was introduced by Representative Joe Wilson-SC in the House of Representatives on  6/13/02
HD Specific Hand/Guidebooks
HD Specific Handbooks <- please click here for the complete list of current documents available,
Advanced Stages of Huntington's Disease Handbook By Jim Pollard
Caring For People With Huntington's Disease
Available in word for printing. 26pgs 
CNA's First Shift - Jim Pollard's excellent brochure providing an overview on an HD patient. Available in word for printing in English, French or Spanish.
Facing Huntington's Disease-A Guide for Families - This valuable resource, originally offered by the Huntington's Disease Association in 1984 still offers some of the BEST information for families living with HD. Download the 20-page PDF document.  
The Juvenile Huntington's Disease Handbook-A Guide for Physicians, Neurologists and Other Professionals 2001.  Available in word for printing. Also see Standford University: Juvenile HD: The Symptoms & Characteristics
Nursing Care in Late Stage HD
Wonderful information written by Joanne Hunt, RN covering approaches to care in HD . Each section is also available in Word format for printing or sharing.
Physical & Occupational Therapy for Huntington's Disease - Excellent  HDSA document on Physical & Occupational therapy in early, middle and late stages of HD.Available in word for printing.
Physician's Guide to Huntington's Disease
2nd Edition On-Line copy.  Download PDF version for sharing. Or PrintWORDDoc 67 pages: Physician's Guide To The Management of HD
Understanding Behavior In HD-Dr.J.Paulsen
Provides people living with HD excellent resources which address the various aspects of behavior in someone with Huntington's Disease.  Available in word or PDF for printing.
Understanding Behavior-Other Resources
With Behavioural Disturbances in HD  by Pete Ellis, Understanding Challenging Behavioral in HD by Julie Snowden, Understanding Behavioral Changes  by Dr. Edmond Chiu and Behavioral Changes In HD~A 2001 Study.  All are available in word for printing.

What is a Huntington's Disease Center of Excellence (CoE)?  How to qualify.  This page has the overall listings of where to find the CoE closest to you.  If your state has a CoE it will also be listed on that state's page, see HD Support Information State-By-State
Increasing awareness of this horrible disease will help further our efforts for funding and programs to assist those who are affected by HD. Therefore it is extremely important, for the future strength of our effort and for future programs, that you participate in the roster.  See how on this page.
Managing Patients With HD
An October 2002 article written by Steven M. Hersch, MD, PhD and Anthony Lechrish, MD plus Response To This Article By Jim Pollard Huntington's Disease Program Director Laurel Lake Center for Health and Rehabilitation  
Learn about Dr. Jane Paulsen's and the HSG involvement in this very important study and how you can participate.
HD Genetic Testing 
Information on Genetic Testing, Testing in HD, Prenatal, Preimplantation, Testing Children, Risks, Personal Stories, Discrimination in the Workforce, Insurance Issues.  Includes fast links to things such as "What Is Predictive Testing in HD? from the HD Center of Excellence at the University of Virginia, which provides a general idea of what is involved in the genetic testing for Huntington's Disease through an facility that abides by the Genetic Testing Guidelines for HD.
How a diagnosis of Huntington disease deeply affects the whole family.
There are quite a few articles that describe the various "stages" of HD. This site provides a Compilation of The [all] Stages Of HD. There are some resources available at the end of "stage" plus each one is in Word format for printing or sharing.
The Unified Huntington's Disease Rating Scale, Motor Functions and description. The Westphal Variant  is typically used for Juvenile HD
Huntington's Disease Activities of Daily Living (ADL) is a informant rated instrument designed to follow disease progress that families can use to measure changes in person with HD to discuss with their physician. Find other surveys, daily living measurement and tests that can be requested to measure abilities at both home and school and reasons why ADL's are important in caregiving.
Definition which are sometimes used  to describe symptoms of/or tests for HD or discuss other diseases or condition which have symptoms similar to Huntington's Disease.
Links to excellent info on HD, below plus more.
  • Huntington Study Group (HSG)
  • Huntington's Disease Research Roster
  • Huntington Disease Drug Works [HDDW]
  • Juvenile HD
  • Kids-Young Adults HD
  • Huntington's Disease Lighthouse (HDL)
  • Huntington's Disease Advocacy Center (HDAC)
  • Stanford University HD "HOPES"
  • Juvenile HD Caregivers Club
  • Our Final Journey-Estate Planning Resources
  • Other Information/HD links
  • Locate A Neurologist by State
  • Movement Disorder Clinics-locate one by State
  • Help CURE HD free greeting cards-use for HD fund raising
Documents in Word for printing and sharing. To help caregivers in day to day care, family planning, appointments, Caregiver Daily Care planning booklet,  HD Information cards for handout, Emergency Information document, medication forms, Personal Health History form, "CNA First Shift" brochure, Driving Assessment Checklist, New Drug Checklist, Social Services Q&A checklist, Asssited Living Q&A checklist, etc.
Need an answer to a question right now....or at 3 AM?  Join one of the on-line Huntington's Disease groups! Not all states have an HDSA Chapter or HD Support Group available to families living with HD.  Click here -> How To Start Your Own HD Support Group  for information to help you start your HD support group in your area.
Links to information: everything from Estate Planning, Guardianships, Caregivers, Patient Support, Insurance, Free Medication Programs, Employment Issues, Financial Aids, Divorce, etc.
Huntington's Disease National Youth Association (NYA) is a group of young people, ages 9 through 29, living with HD.  Find out how you can join or help this organization