HDSA Publications

The Huntington's Disease Society of America has an extensive library of informative books, magazines and pamphlets available. The Marker magazine, an outstanding source of information, is designed to provide information and opinion and relay items of interest to individuals with Huntington's Disease and their families, health care professionals, interested friends and supporters.

Our informative Family Guide Series offers an overview of key areas. Kindly note that the information provided within is not meant as an indicator for a diagnosis or medical treatment.

NOTE: Articles from The Marker magazine, the Family Guide Series and the Fast Facts about HD pamphlet are the property of the Huntington's Disease Society of America. Reproduction of this information in whole or in part without the express permission of the Huntington's Disease Society of America is strictly forbidden.

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General Information
Genetics and Genetic Testing
Caregiving
Clinical Care
Physical and Occupational Therapy
Juvenile Huntington's Disease
Behavior
Nutrition and Swallowing
Personal and Family Issues
Research
Others
Foreign Language Publications
Law Enorcement Kit

 

 

General Information

 

Fast Facts About HD

HDSA, 2013. Presents key information about HD and HDSA.

 

Free, limit one

per person**
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Purchase

 

Huntington's Disease: A Guide for Families

HDSA, 2009, 21-page booklet. This short booklet offers an overview of HD.

 

$2.00 each**
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Purchase

 

Lifting the Veil of Huntington's Disease

Recommendations to the field from the Huntington's Disease peer workgroup.

 

Download Only
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ADVANCE DIRECTIVES FOR HD

Family Guide Series

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HDSA CENTERS OF EXCELLENCE: BUILDING ON THE PAST - VISION FOR THE FUTURE

Report for the Field on the Centers of Excellence Program

Free, limit 1
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LONG TERM CARE MONOGRAPH

Report based on the work of the HDSA Long Term Care Workgroup

Free, limit 1
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Genetics and Genetic Testing

 

Genetic Testing for Huntington's Disease: A Guide for Families

HDSA, 2009, 18-page booklet. An introductory guide to genetic testing for HD.

 

$2.00 each**

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Purchase

Genetic Testing for Huntington's Disease: Its Relevance and Implications. 

US Huntington's Disease Genetic Testing Group Revised 2003, 27 Pages.   Presents the current diagnostic usefulness of genetic testing for HD and discusses the results of surveys that evaluate issues related to testing individuals at risk for this disease. This publication is extremely useful not only to those working in the HD community, but to all professionals who care for patients with adult-onset genetic disorders.

 

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Caregiving

 

Caregiver's Guide to Communicating with Healthcare Providers


Vicki Wheelock, MD
HDSA, 2010, 18-page booklet. An introduction to working with Healthcare Providers and talking about Huntinton's Disease.

$2.00 each
Purchase

A Caregiver's Guide to Huntington's Disease

WEMOVE 2011, 20 Pages. An easy reference for caregiver's caring for a loved one with Huntington's disease. Includes practical tips and advice.

 

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A Caregiver's Handbook for Advanced-Stage Huntington's Disease

Jim Pollard, 2000, 69 pages. Written by medical professionals for at-home or care-center caregivers, this book addresses the unique circumstances presented by late-stage HD. Practical tips about how to care for an individual with HD cover eating and nutrition, communication, safety, hygiene, cognitive changes, emotional changes, medical issues and much more. Extensive indices provide a variety of medical, social and product resources.

 

 

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Long Term Care: A Guide for Families

Suzanne Imbriglio, PT, Virginia Goolkasian LSW/MS, Ann Murfitt LICSW.  This pamphlet contains information about skilled nursing facilities, addressing special needs of HD patients and how to advocate for your loved one in a Long Term Care Facility.

 

$2.00 each**

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Clinical Care

 

A Physician's Guide to the Management of Huntington's Disease (3rd Edition)

Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD,  HDSA 2011. Includes in-depth information on principles of treatment,  genetic testing, medications, management of cognitive and behavioral problems and a new section with case studies.

 

$7.00 each
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Physical and Occupational Therapy

 

Physical and Occupational Therapy for Huntington's Disease: A Guide for Families

Suzanne Imbriglio, PT, HDSA, 2010. Provides helpful information and resources for people in all stages of HD. Revised and updated in 2010 to include new trends in HD care.

 

$2.00 each**

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Juvenile Huntington's Disease

 

The Juvenile HD Handbook: A Guide for Families and Caregivers -- 2nd Edition

Martha Nance, MD, 2007. This book provides readers with information about Juvenile HD, including genetic testing, when it is appropriate to perform the test, how to understand your HD affected child, and what to do if you find yourself in compromising situations as well as where to turn for help.

 

$7.00 each**

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Juvenile HD: A Guide for Families

Edited by Martha Nance, MD, Randi Jones PhD, Suzanne Imbriglio PT & Betsy Gettig MS/CGC.  This pamphlet defines Juvenile HD, diagnosis, specific medical issues, prognosis of the disease, financial, legal & social issues and more.

 

$2.00 each**

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Juvenile Huntington's Disease and the School Experience

Edited by Martha Nance, MD.  This book provides support and guidance to schools who have a student with Juvenile HD.

Download only:

Part 1

Part 2

 

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Behavior

 

Understanding Behavior in Huntington's Disease: A practical guide for individuals, families and professionals coping with HD

Jane S. Paulsen, PhD, 2000, 46 pages. A must-read for anyone who deals extensively with an HD-affected individual, this book explains not only the behavior challenges created by HD, but their origin in the HD-affected brain. By understanding the basis of these behaviors, Dr. Paulsen is able to suggest effective ways of dealing with and preparing for them. The book also covers environmental, individual and health factors that contribute to behavior problems. Problem-solving tips and techniques are given for behaviors arising from communication difficulties, memory problems, cognitive break-down and emotional instability.

 

 

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Nutrition and Swallowing

 

Speech-language and swallowing difficulties: A Guide for Families

Karen Bryant, Ph.D, CCC/SLP, HDSA, 2014, 22-pages. provides information and resources on speech and swallowing problems associalted with HD and offers case studies and potential solutions. 

Free, Limit 1 per person

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Nutrition and Huntington's Disease: A Guide for Families

Ann Gaba, MS, RD, EDM, HDSA, 2010, 26-pages. Discusses the nutritional needs in early, middle and late stage HD, provides hints for increasing calorie intake and recipes. Revised and updated in 2010.

 

 

$2.00 each**
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Personal and Family Issues

 

Is Daddy OK?

Janet Howes, ACSW 2004, 24 pages

Book is ideal for kids, age 6 through 12 who have a parent, family member or other adult in their life who is affected by HD. Book is intended to serve as tool for parents to read along with children or as a starting point for discussions about how the story relates to their specific experiences.

A percentage of the proceeds from this book go to HDSA programs.

 

$12.95  each
Purchase

Talking with Kids: A Guide for Families

HDSA, 2012, 26-page booklet. An introductory guide to talking about Huntington’s disease with kids, youth, and teens.

 

$2.00 each

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TALKING WITH KIDS ABOUT HD

HDSA, 2013, 111 pages.  A book discussing how to have a conversation with children and family members of any age around Huntington's disease and JHD.

$10.00 each

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Research

 

 

Past Editions of Toward a Cure

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Past Editions of The Marker

 

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Others

 

Homeward Journey

Poetry of Leslie Foor, 2003, 140 pages

Depicts a young writer's life through the art of poetry. Mr. Foor was affected by HD in his mid thirties but he never gave up hope. He continued to write poems until his struggle with the disease ended at the age of 48.

Percentage of the proceeds from this book benefit HDSA programs.

 

$14.95 each

Purchase

 

The Greatest Man I Never Knew

by Elizabeth Baxter, 2012 168 pages.  A story about a daughter coping with the loss of her father, the man she never knew.  In the story, she describes some of her own struggles and strengths since she herself is at risk for Huntington’s disease, the same disease that had robbed her of her father.

 

$22.00 each

Purchase

It’s Better to Laugh than Cry

by Clarence Vos, 2013, 83 pages.  A look at one family’s journey through Huntington’s disease and efforts to stay positive through the journey.

$10.00 each

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Foreign Language Publications

 

Huntington: Toda Una Historia,

119 pages, Spanish  

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Doenca de Huntington: Nao ihe toca a si...mas toca a todas

 Portuguese

Download Only

 

Problemas de conducta en la enfermeda de Huntington


90 pages, Dr. Jane Paulsen, Spanish
Asociacion de  Corea de Huntington Espanola (ACHE)

 

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Que es la Enfermedad de Huntington?


Una guia para ninos (entre 8 y 14 anos)
, 9 pages, Spanish
Asociacion de  Corea de Huntington Espanola (ACHE)

 

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Enfermedad de Huntington: un camino a la Esperanza


17 pages, Spanish
Asociacion de  Corea de Huntington Espanola (ACHE)

 

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Comunicacion con los Provedores de Salud: Guia para los Cuidadores

18 pages, Spanish
Revisado por: Vicki Wheelock, M.D. Centro de Excelencia de la HDSA
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Martir-Negron, M.D.

 

$2.00 each

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Purchase

 

La Enfermedad de Huntington: Serie de Guias Familiares

18 pages, Spanish

Revisado por: Kathleen Shannon, M.D., Centro de Excelencia de la HDSA
Steven Hersch, M.D., Ph.D., Centro de Excelencia de la HDSA
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Martir-Negron, M.D. 

 

 

$2.00 each

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La Prueba Genetica: Serie de Guias Familiares

20 pages, Spanish
Revisado por: Randi Jones, Ph.D., Centro de Excelencia de la HDSA
Ami Rosen, CGC, Centro de Excelencia de la HDSA
Traducido al español por: Arelis E. Martir-Negron, M.D.

 

 

 

$2.00 each

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Enfermedad Juvenil de Huntington: Serie de Guias Familiares 


40 pages, Spanish
Editado por:
Martha Nance, M.D.
Randi Jones, Ph.D.
Suzanne Imbriglio, P.T.
Betsey Gettig, M.S., C.G.C.
Traducido por:
DCM, SCVMC-Language Services (ST-4037 – 7/8/2010) 

 

$2.00 each

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Cuidados a Largo Plazo para la EH: Serie de Guias Familiares

18 pages, Spanish
Revisado por: Suzanne Imbriglio, PT (Terapista Física)
Virginia Goolkasian
Ann Murfitt, MSW., LICSW
Traducido al español por: Arelis E. Mártir-Negrón, M.D.

 

$2.00 each

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La Nutricion y la EH: Serie de Guias Familiares

25 pages, Spanish

Revisado por: Ann Gaba EdD, RD, CDN, CDE

Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Mártir-Negrón, MD

 

$2.00

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Terapia Fisica y Ocupacional: Serie de Guias Familiares


34 Pages, Spanish
Revisado por: Suzanne Imbriglio, PT (Terapista Física)
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Mártir-Negrón, M.D.

 

$2.00

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Datos Rapidos Sobre la EH


Spanish
Presenta informacion clave sobre la EH y la HDSA 

 

Free, Limit 1 per person

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 Guía para Medico sobre el Manejo de la enfermedad de Huntington Tercera edición

Spanish

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