Advocacy

Behavior

Understanding Behavior in Huntington’s Disease: A Guide for Professionals

Arik C. Johnson, Psy.D., Jane S. Paulsen, Ph.D., 2014, 66 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, the authors are 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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer this updated guide available to HD families and their medical professionals at no cost.

Since the first edition of Understanding Behavior was published in 2000, much has been added to our understanding about HD including behavioral changes that take place along the continuum of the disease.

Written specifically for medical professionals, this second edition contains strategies that can be shared with caregivers as well as case studies that illustrate many of the most challenging behaviors associated with HD.

Click here to fill the form and get a printed copy of this guide.

caregiving

HDSA FAMILY GUIDE SERIES:
Caregiver’s Guide to Communicating with Healthcare Providers – Huntington’s Disease

HDSA, 2010, 18-page booklet. An introduction to working with healthcare providers and talking about Huntinton’s disease.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

$2.00

A Caregiver’s Guide to Huntington’s Disease

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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

HDSA FAMILY GUIDE SERIES:
Long-Term Care

HDSA, 2019, 35-page booklet. This guide is designed to help families facing the challenge of HD learn more about long-term care and to understand what may be involved in arranging this care for a loved one.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD

PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372 ext 222.

In stock

QUANTITY:

$2.00

Caregiver Guide for Mid to Late Stage Huntington’s Disease:
For Long-Term Care Facilities and In-Home Care Agencies

2014, 116 pages. This guide will provide caregivers with the information and resources that they need to provide the best care to persons with HD — to work through the difficult symptoms to reach the person behind the disease, and to allow the person to function as well as possible each step of the way. The goal of care for the person with Huntington’s disease is to promote independence, freedom of choice, and ability to function within the confines of safety for the person, the family, and the care team.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer free printed copies of this guide to professionals involved with long-term care facilities and in-home care agencies.

Click here to fill the form and get a printed copy of this guide.

A Caregiver Guide for HD Families

The Caregiver Guide for HD Families includes discussion on the benefits of physical and occupational therapy and nutrition along the continuum of disease progression but also offers practical suggestions for unique home caregiving issues such as driving, the role of young adults as caregivers and managing JHD at home.

To download the electronic copy please click here

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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
To order bound, printed copies of this publication click Here

Foreign Language publications

Serie de Guías Familiares:
Comunicación con los Proveedores de Salud:
Guía para los Cuidadores

SPANISH / 18 pages
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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

Serie de Guías Familiares:
La Enfermedad de Huntington

SPANISH / 18 pages
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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

Serie de Guías Familiares:
La Prueba Genética

SPANISH / 20 pages
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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

Serie de Guías Familiares:
Enfermedad Juvenil de Huntington

SPANISH / 40 pages
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)

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

Serie de Guías Familiares:
Cuidados a Largo Plazo Para la EH

SPANISH / 18 pages
Revisado por: Suzanne Imbriglio, PT (Terapista Física)

Virginia Goolkasian / Ann Murfitt, MSW., LICSW

Traducido al español por: Arelis E. Mártir-Negrón, M.D.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

Serie de Guías Familiares:
La Nutrición y la Enfermedad de Huntington:
Una Guía para Familias

SPANISH / 25 pages
Revisado por: Ann Gaba EdD, RD, CDN, CDE

Editado por: Karen Tarapata & Deb Lovecky, HDSA

Traducido al español por: Arelis E. Mártir-Negrón, MD

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

Serie de Guías Familiares:
Terapia Fisica y Ocupacional

SPANISH / 34 pages
Revisado por: Suzanne Imbriglio, PT (Terapista Física)

Editado por: Karen Tarapata & Deb Lovecky, HDSA

Traducido al español por: Arelis E. Mártir-Negrón, M.D

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

$2.00

Datos Rapidos Sobre la EH

SPANISH / 2 pages

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

Guía Para Medico Sobre el Manejo de la
Enfermedad de Huntington Tercera Edición

General Information

Huntington’s Disease: A Family Guide

HDSA, 2016, 17-page booklet. This short booklet offers an overview of HD.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

$2.00

Lifting the Veil of Huntington’s Disease: Recommendations to the Field from the Huntington’s Disease Peer Workgroup

Recommendations to the field from the Huntington’s Disease peer workgroup

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

HDSA FAMILY GUIDE SERIES:
Advanced Directives for Huntington’s Disease

HDSA, 2013, 28-page booklet. This short booklet offers an overview of advanced directives and special considerations around Huntington’s disease.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

Long Term Care Monograph

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

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

HDSA Brochure

What to Know: Entering the Workforce

genetics & genetic testing

HDSA FAMILY GUIDE SERIES:
Genetic Testing – Huntington’s Disease

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

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

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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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$7.00

HDSA FAMILY GUIDE SERIES:
Juvenile Onset HD

Edited by Martha Nance, MD.  This pamphlet defines Juvenile HD, diagnosis, specific medical issues, prognosis of the disease, financial, legal and social issues and more.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

Juvenile HD and the School Experience: Education and the Child Affected by Juvenile Onset HD

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

DOWNLOAD: Click here for a FREE PDF DOWNLOAD

Law enForcement Issues

FOR HD INDIVIDUALS & FAMILIES:
Caregiver Guide & Support Documents

This booklet contains general guidelines for working with law enforcement, feedback regarding situations that may cause confrontations, and information about what to do in case of arrest or detainment.

DOWNLOADS:
CAREGIVER GUIDE: Click for a FREE PDF DOWNLOAD.

I have HD Card: A wallet card with information about HD.

HD Profile Card: A form that can be personalized with an individual’s photo and identifying information.

My Crisis Template: A form that can be personalized with emergency numbers.

 

For additional copies please contact hdsainfo@hdsa.org

FOR LAW ENFORCEMENT PROFESSIONALS
& FIRST RESPONDERS:
Law Enforcement Training Guide & Fact Sheet

This booklet contains an introduction to HD, and information about managing the motor disorder, the cognitive disorder, and the psychiatric disorder. It also contains a list of supporting questions to ask the caregiver, as well as information about special issues that arise in incarceration and confinement.

DOWNLOADS:
LAW ENFORCEMENT TRAINING GUIDE: Click for a FREE PDF DOWNLOAD.

Key Points for Law Enforcement FACT SHEET: A one-page document containing key points for law enforcement (prints double-sided on legal size paper).

 

For additional copies please contact hdsainfo@hdsa.org

Nutrition & Swallowing

HDSA FAMILY GUIDE SERIES:
Speech-Language and Swallowing Difficulties

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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

HDSA FAMILY GUIDE SERIES:
Nutrition and Huntington’s Disease

Discusses the nutritional needs in early, middle and late stage HD, provides hints for increasing calorie intake and recipes.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$2.00

PERIODICALS

HDSA Year in Review

Look back on the highlights in HD research, advocacy, support and events from across the country!

DOWNLOAD: Click the links below for FREE PDF DOWNLOADS.

Year In Review 2022

Year In Review 2021

Year In Review 2020

Year In Review 2019

Year In Review 2018

Year in Review 2017

Year in Review 2016

Year in Review 2015

Year In Review 2014

 

The Marker (Formerly Research Report)

Look back on the highlights in HD research, advocacy, support and events from across the country!

DOWNLOAD: Click the links below for FREE PDF DOWNLOADS.

The Marker: 2022

The Marker: 2021

The Marker: 2020

The Marker: 2019

The Marker: 2018

The Marker: 2017

The Marker: 2016

The Marker: 2015

The Marker: 2014

The Marker: 2013

The Marker: 2012

The Marker: 2011

Personal and family issues

HDSA FAMILY GUIDE SERIES:
Talking With Kids — Huntington’s Disease

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

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 8800-345-4372 ext 222

QUANTITY:

$2.00

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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$10.00

PERSONAL NARRATIVES

Homeward Journey
The Poetry of Leslie R. Foor

Leslie R 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.

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$14.95

The Greatest Man I Never Knew

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.

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$22.00

It’s Better to Laugh Than Cry

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

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222

QUANTITY:

$10.00

Given Away: A Sicilian Upbringing

Given Away: A Sicilian Upbringing

by Anna Randazzo

A story of a young girl’s perseverance through the the travails of World War II and beyond. An inspiring tale of the human will to triumph over adversity. 10% of the proceeds from sales of Given Away: A Sicilian Upbringing will benefit HDSA’s mission.

TO ORDER:
In print:  http://www.amazon.com/Given-Away-A-Sicilian-Upbringing/dp/0989481921

E-BOOK:  https://www.smashwords.com/books/view/327465

An AffaiЯ Worth Remembering With Huntington’s Disease

Price: $25.00 USD

Huntington's Disease is a progressive, life stripping hereditary disease for which there is no cure. LOVE is the most powerful medicine available in living with and caring for a person at-risk and in the throes of it. This is a Love Story that illustrates how a marriage and a family can live, survive and thrive with an illness. Humor, frustration and sadness are just a few emotions experienced by the reader. True Love prevails as this disease bruises and batters a family's spirit. Many gifts are discovered during times of illness. Incurable love and intimacy are two such gifts.

This book is the Author's journey as wife, mother, breadwinner, caregiver and widow/spouse survivor of Huntington's Disease. It is about creating “Awareness” and giving the families affected by Huntington's Disease a “Voice” to a situation that few understand including friends, family, co-workers, and the community. Huntington's Disease is REAL and knowledge of the disease and it's ripple effect on a family is REAL.

This book speaks to at least four communities, those affected by Huntington's Disease or any chronic, progressive or terminal illness; the spiritual community, those who find strength through faith in the most trying moments; the therapeutic community, those who treat individuals, couples and families affected by illness; and the medical community, those doctors and other medical professionals, whether in primary care or specialists, who treat the patient, their caregivers or other family members of the illness, which can complicate the healing process.

Book Talks & Signings:

Debbiepausig.books@gmail.com                 North Haven, CT, USA                      203.985.8246

Purchase a signed copy from me personally at www.debbiepausigmft.com in the “Affair Worth Remembering” tab and order via PayPal, then go to the “Contact Me” tab and enter the code DALLAS15 in the notes section and any special inscription you would like. $1.00 from each book sale will be donated to HDSA. Thanks!

Or-Purchase via Print on Demand through the publisher at: www.Lulu.com/content/15318021

Shattered Dreams–But Hope

By Elton Higgs

Shattered Dreams–But Hope is a distillation of the experiences of Laquita and Elton Higgs in caring for their two JHD adopted daughters. Laquita and Elton have not only shared their own caregiving experiences at a deeply personal level, but they have also offered observations and recommendations to other HD caregivers about coping with the special challenges and stresses of HD. They address the special characteristics and needs of a JHD patient, measures to preserve the mental and physical health of the caregiver, and ways of dealing with the governmental and medical agencies who must be sought to meet the needs of an HD patient and his/her family. But this is also a book for all long-term caregivers, whatever the disablement of the one being cared for. The concluding chapter portrays what two people of faith have learned about suffering, endurance, and love when grappling with the challenge of caring for a loved one day after day, year after year.

100% of the proceeds will go to HDSA.

QUANTITY:

$9.00

Watching Their Dance

100% of the proceeds from “Watching Their Dance” is being donated to HDSA

To purchase “Watching Their Dance” go to Therese's author website:   www.theresecrutchermarin.com It's also available on Amazon, B&N and in Kindle, Nook, Kobo formate.

Therese Crutcher-Marin, B.S., M.S.

Member on the HDSA Northern California Chapter Board

Author of Watching Their Dance: Three Sisters, A Genetic Disease and Marrying Into a Family Living At Risk for Huntington's

Synopsis:  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

Would you marry the man you adored if you knew he had a chance of inheriting one of the cruelest diseases on earth?

Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John’s sisters announce they finally know what killed their mother. Phyllis had Huntington’s disease, an inherited neurological disease with horrible odds: John and his three older sisters have a fifty-percent chance of inheriting this terrible wasting disease, which slowly kills the brain cells that affect movement and cognition. There is still no treatment or cure.

Therese takes the biggest gamble of her life and marries John despite his precarious future. Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger when she can’t control a situation, to find joy in the simple things. Life is just too precious to waste a moment on small stuff. And though John’s sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.

Visit my Author Website: theresecrutchermarin.com

Visit my Author Facebook Page:  https://www.facebook.com/authortheresecrutchermarin/  

Amazon Author Page: https://www.amazon.com/author/theresecrutchermarin

amazon.com/author/theresecrutchermarin

https://www.goodreads.com/book/show/34703766-watching-their-dance

Limited Edition Woody Guthrie Tribute Concert Box Sets Signed by Nora Guthrie

On January 20, 1968, the “A Tribute To Woody Guthrie” concert at Carnegie Hall was the first major fundraiser for the Huntington’s Disease Society of America (formerly known as the Committee to Combat Huntington’s Disease).

To celebrate its 50th Anniversary, HDSA is selling Limited Edition Box Sets signed by Woody Guthrie’s daughter, Nora!

The 3-CD Set with two beautifully illustrated books containing historic liner notes and Guthrie biography, original concert reviews and photographs, attendees interviews and artists bios, and concert ephemera from both the 1968 Concert and the 1970 Concert at the Hollywood Bowl.

When Woody Guthrie died on October 3, 1967, after a stubborn fifteen year bout with Huntington‘s disease, a lot of people who had known him, worked with him, or just sung his songs felt a spontaneous desire to do something.

The list of artists joined Woody’s own friends and peers with the next generation of songwriters and musicians just coming into their own. Appearing at the January concert were Judy Collins, Bob Dylan (in the first public appearance after his motorcycle accident in 1966 with members of The Band), Jack Elliott, Arlo Guthrie, Richie Havens, Odetta, Tom Paxton, Pete Seeger. Actors Will Geer and Robert Ryan narrated the program. Both performances were sold out an hour after tickets went on sale. Those fortunate enough to attend participated in one of the most exciting and remarkable musical experiences of all time.

Two years later, eighteen thousand people attended the west coast Tribute which took place on September 12, 1970, at the Hollywood Bowl. Joan Baez, Jack Elliott, Arlo Guthrie, Odetta, Country Joe McDonald, Richie Havens, Earl Robinson and Pete Seeger performed. Peter Fonda joined Will Geer in narrating. The house band included members of Swampwater and Ry Cooder.

This amazing Box Set features:

  • Twenty never before released tracks
  • Bonus tracks include interviews with Judy Collins, Jack Elliott, Arlo Guthrie, Country Joe McDonald, Phil Ochs, Tom Paxton, and Pete Seeger
  • Rare photos and never before seen stills from the Hollywood Bowl show film masters
  • Essays by Will Kaufman, Wenzel, and Sean Wilentz
  • Reproduction of the original 1972 TRO Concert Book includes historic and concert photos with music notations and lyrics.

In stock

$130.00

Finding Our Way

Read Marjorie Guthrie’s first-hand account of how Huntington’s disease impacted the Guthrie family and how they never gave up hope.

 

Click here to Download

Physical & Occupational therapy

HDSA FAMILY GUIDE SERIES:
Physical and Occupational Therapy – Huntington’s Disease

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.

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

$2.00