Topics


Advocacy

Behavioral Disorder

Caregiving

Clinical Trials/Research

Cognitive Disorder

Disability/Benefits

Genetic Testing /Counseling

General

Health Care

Juvenile-Onset HD

Long Term Care

Personal Stories

Physical Therapy/Occupational Therapy/Speech Therapy/Nutrition:

Planning

 

Advocacy:

Know Your Rights: How HIPPA Protects You, Lunch and Learn, April 2013

Huntington's Disease and the Americans with Disabilities Act, by Lisa Dorinzi, We Are HDSA, August 2012

Our Way to Make HD in Our Life a Positive Experience, by Kathleen Smulski, The Marker, Spring 2012

HDSA Hosts Inaugural Congressional Briefing, by Jane Kogan, We Are HDSA, January 2012

Know Your Rights: How GINA Protects You, by Peggy Tighe, Caregiver's Corner, January 2012

Getting Involved in Advocacy: I had no idea it would be this easy, by Laura Hillard Quinn, We Are HDSA, September 2011

HDSA Advocacy, by Jane Kogan, Caregiver’s Corner Webinar, May 2011

A Primer on the Americans with Disabilities Act, by Charles C. Diggs, The Marker, 2003

 

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Behavioral Disorder:

Managing Psychiatric Symptoms, by Peggy Nopoulos, Caregiver's Corner Webinar, December 2012

Crisis Situations & De-Escalation Strategies, by Arik Johnson, Caregiver’s Corner Webinar, August 2011

Explosive HD, by Arik Johnson, We Are HDSA, January 2011

Learning More About Suicide and HD, by Carissa R. Gehl and Jane S. Paulsen, The Marker, May 2009

Partnership: Managing Conflict, by Elizabeth Penziner, The Marker, October 2006

 

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Caregiving:

HD in the Family: Implications, Challenges, and Lifelines, by Amy Chesire, Caregiver's Corner Webinar, November 2012

Travel Thoughts, by Karen Tarapata, We Are HDSA, August 2012

Law Enforcement Toolkit: Caregivers, by Cheryl Sullivan Staveley, Caregiver's Corner Webinar, May 2012

Self-Compassion: An Exercise in Healing, by Sharon R. Cascone, We Are HDSA, November/December 2011

Care for the Caregiver, by Lisa Kjer, Caregiver’s Corner Webinar, October 2011

How Do I Ask for Help with Caregiving?, Lynn Ross, We Are HDSA, June 2011

What You Need to Know About Respite, The Marker, Spring 2011

Caregiving Coping Strategies, by Marsha Miller, We Are HDSA, May 2011

Caregiver Depression, We Are HDSA, November 2010

Caregiver Interventions, by Mary Edmondson, Caregiver’s Corner Webinar, August 2010

Caregiver Coping Strategies, by Marsha Miller, Caregiver’s Corner, June 2010

Managing Caregiving: Techniques that Can Help, The Marker, Spring 2010

Caregivers as Advocates, The Marker, May 2007

Finding Facts on the Internet, The Marker, May 2007

Getting Connected: Resources for Huntington’s Disease Families, by Leo G. Rafail, The Marker, October 2006

Growing Up in an HD Family, by Janet K. Williams, The Marker, October 2006

Communicating with Caregivers: How Caregivers View Their Role, The Marker, Fall 2005

Signs of Struggle: When to Worry About Caregivers Stress, The Marker, Fall 2005

Respite Care: Renewing the Spirit with Relief Breaks, The Marker, Fall 2005

Caregiver Depression, The Marker, 2004

Caregiver Self Advocacy: Messages to Live By, The Marker, 2003

 

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Clinical Trials/Research:

Overview of Stem Cells in HD Research, by George Yohrling, We Are HDSA, April 2013

From the Bench: The Future of HD Research at HDSA, by George Yohrling, Toward A Cure, Winter 2012

The Changing Prevalence of Huntington's Disease, by Chris Kay, emily Fisher, & Michael Hayden, Toward A cure, Winter 2012


Zinc Finger Proteins: Novel Technology to Target Huntingtin DNA, by George Yohrling, Toward a Cure, Winter 2012

ENCODE identifies "Genetic Switches" in DNA, by Marsha Miller, We Are HDSA, October 2012

Researchers Meet in Palm Springs to Discuss Advances in the HD Pipeline, by Fred Taubman, The Marker, Spring 2012

Making It Personal: The HDSA Clinical Trials Diplomat Program, by Karen Tarapata, We Are HDSA, September 2011

Update on the Pipeline for Drug Discover, The Marker, Spring 2011

The Earliest Signs of HD: A Review of Kids At-Risk for HD Study, by Peg Nopoulos, The Marker, Spring 2011

Second Induced Pluripotent Stem Cell (ISPC) Consorita Workship, The Marker, Spring 2011

Participant Involvement Leads to Breakthroughs in PREDICT-HD Study, The Marker, Spring 2011

How Are New Treatments Found for Huntington’s Disease?, by Kathleen M. Shannon, We Are HDSA, February 2011

Research Volunteers-Heroes in Helping, by Jane Kogan, We Are HDSA, February 2011

Be A Hero in Helping, by Jane Kogan, We Are HDSA, February 2011

In Focus: Update on PREDICT by Sean Thompson, Toward a Cure, Winter 2010

Investigating the Immune System and the Role of the Cannabinoid Receptor (Type-2) in Pathogenesis of Huntington’s Disease by Diana Dunkleberger, Toward a Cure, Winter 2010

From Bench to Bedside, by Mary MacDonald, The Marker, Spring 2010

Hope in Balance, by Michael Hayden, The Marker, Spring 2010

What is HD Trials.org?, The Marker, Spring 2010

Why Should We Bother with ACR16 by LaVonne Goodman, The Marker, May 2009

Reporting Clinical Trial Results to Research Participants in Huntington Disease Studies, by Lisa Deuel and Ray Dorsey, The Marker, May 2009

Huntington’s Disease: Is there a Peripheral Pathology in Non-Neural Tissue?, by Gillian Bates and Maria Bjorkqvist, Toward A Cure, Winter 2008

Molecular Approaches to Dissecting the Pathogenesis of Huntington’s Disease, by Paul Muchowski, Toward a Cure, Winter 2008

5th Annual Phyllis E. Dake Huntington’s Disease Research Symposium, The Marker, November 2007

Methodology & Observations from the Huntington’s Disease Drug Works Trials, by LaVonne Goodman and Nathan Goodman, The Marker, November 2007

HDSA Pipeline to Drug Discovery, by Jim Gusella, The Marker, October 2006

In Focus: Prevention of Huntington’s Disease Mutant Huntingtin – The Uncut Version, by Rona K. Graham, The Marker, October 2006

Are Clinical Trials Right for You or Your Family Members?, The Marker, Fall 2005

Cancer and Neurodegeneration in HD: An Unexpected Connection, by Christopher Ross, The Marker, Fall 2005

Results of a Study Tracking Energy Balance in People with Early-Stage HD, by Ann Gaba and Carol Boozer, The Marker, Fall 2005

Novel Approach to Gene Therapy Holds Great Promise for HD, The Marker, Spring 2005

Fighting Back Against HD, by Christopher Ross, The Marker, Fall 2001

 

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Cognitive Disorder:

Cognitive Strategies Part II: A Social Worker Perspective, by Anne Leserman, Caregiver's Corner, October 2012 

Simplifying Life Accomodate Cognitive Change, by Arik Johnson, Caregiver's Corner Webinar, September 2012

Are There Any Simple Tips for Managing Problems with Thinking and Memory in HD?, by Kathleen M. Shannon, We Are HDSA, January 2011

Coping with Cognitive Decline, by Kevin Duff, The Marker, November 2008

 

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Disability/Benefits:

Workplace Accomidations for HD, by Lisa Dorinzi, M.A. & Eddie Whidden, M.A., Lunch & Learn, March 2012

Disability FAQs, by Drew Yeannakis, We Are HDSA, November/December 2011

Applying for Disability Benefits, by Jane Kogan, We Are HDSA, July 2011

“Ask Medicare” A Website in Support of Caregivers, The Marker, Spring 2011

Disability Strategies III: Denials & Appeals, by Drew Yeannakis, Caregiver’s Corner Webinar, April 2011

I Am Struggling at Work, But I am Not Sure I am Ready for Disability.  Is There Another Option?, by Stacey Barton, We Are HDSA, March 2011

Disability Strategies II, by Drew Yeannakis, Caregiver’s Corner Webinar, October 2010

Applying for Disability, Drew Yeannakis, Caregiver’s Corner Webinar, July 2010

 

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Genetic Testing/Counseling

When Should I Speak to A Genetic Counselor?, Lauren Dennis, We Are HDSA, June 2011

To Test or Not To Test, by Ami Rosen, We Are HDSA, April 2011

The Genetic Information Nondiscrimination Act, The Marker, Spring 2010

Presymptomatic Testing in Huntington Disease, by Kimberly Quaid, The Marker, May 2009

Presymptomatic Genetic Testing in Minors for HD: A European Perspective, by Pascal Borry, The Marker, May 2009

Genetic Testing Before 18: Should a Child Decide?, by Kimberly A Quaid, The Marker, October 2006

 

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General:

Internet Resources for the HD Community, by Karen Tarapata, We Are HDSA, June 2013

What Should I Tell my Adult Children about My Huntington's Disease, by Kit McFarlane, We Are HDSA, February 2013 

 What is unawareness and how do I deal with it?, by Anne Leserman, We Are HDSA, December 2012 

Tips for Identifying Community Resources, by Karen Baker, Lunch and Learn Webinar, August 2012 

Youth Support Growing Around the World!, by B.J. Viau, We Are HDSA, June 2012

HDSA Law Enforcement Toolkit II: Working with Law Enforcement, by Lynn Ross and Kevin Staveely, Caregiver's Corner, June 2012

Spirituality & HD, by Jim Bridges, Caregiver's Corner, February 2012

What are my husband’s HD symptoms going to be like in the future?, Ask the Social Worker, January 2012

Facilitating Access and Communication Through Assistive Technology, by Kathleen Samulski, Caregiver’s Corner Webinar, September 2011

Living Positively At-Risk for HD, by Jang-Ho Cha, The Marker, Spring 2011

At-Risk Dating: When to Talk About HD, by Randi Jones, We Are HDSA, March 2011

We Need to Talk: Opening a Dialogue in Your Family about Huntington’s Disease, by Janet K. Williams & Martha Driessnack, We Are HDSA, March 2011

Team Management of HD, By Martha Nance, Caregiver’s Corner Webinar, February, 2011

Nutrition Intervention in Huntington’s Disease, by Susan Sandler, The Marker, Spring 2010

Finding the Care You Need, by Martha Nance, We Are HDSA, November 2010

Living Positively, by Jang Ho Cha, Caregiver’s Corner Webinar, September, 2010

In Focus: Weight Loss in HD Increases with Higher CAG Repeat Number, The Marker, Spring 2010

Late Onset of Huntington’s Disease: How Common?  How Severe?, by Hillary P. Lipe, The Marker, Spring 2010

Complementary and Alternative Medicines and Huntington’s Disease, by Melanie M. Brandabur, The Marker, October 2006

Eating Right Can Make A Difference, by Stacey Peyerl, The Marker, October 2006

Encouraging Hope Through Music Therapy, by Elizabeth Giffin and Petery Meyer, The Marker, October 2006

Huntington’s Disease and Driving, The Marker, Spring 2005

Dehydration and HD, by Teresa Tempkin, The Marker, 2003

Tracking Energy Requirements in People with HD, by Ana Gaba and Carol Boozer, The Marker, Spring 2001

At-Risk for Abuse in HD, by Richard M. Dubinsky, The Marker, Spring 2001

Living with Grief and Loss, by Barb Heiman, The Marker, Spring 2001

Preventing Weight Loss in HD Patients, The Marker, 2001

 

 

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Health Care:

Navigating the Health Care Maze, by Lift Caregiving, We Are HDSA, October 2011

Patient & Family Centered Care, Tara LoCastro, We Are HDSA, October 2011

Navigating Emergency Room Visits, by Steven Hersch, The Marker, Spring 2011

Communicating with Healthcare Professionals, The Marker, Fall 2001

Telemedicine Aids HD Care in Rural Virginia, The Marker, Spring 2001

Telecommunications Aids Diagnosis and Patient Care, The Marker, Spring 2001

 

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Juvenile-Onset HD:

Social Security Administration Announces Compassionate Allowance Designation for JHD, by Jane Kogan, We Are HDSA!, June 2012

Diagnosing JHD, by Dr. Martha Nance, Caregiver's Corner, April 2012

Back to School with Juvenile-Onset HD, By Karen Tarapata, We Are HDSA, October 2011

Seeking Diagnosis, Care, and a Cure for Juvenile HD, The Marker, Fall 2001

Youth and Juvenile HD: Finding Time for Fun, The Marker, Fall 2001

Juvenile Huntington’s Disease, by Martha Nance, The Marker, 2000

 

 

 

Long Term Care:

Long Term Care Insurance by Stacey Barton, We Are HDSA, February 2013

Long Term Care Placement by Gwen Johnson, We Are HDSA, August 2011

Ready for Placement?, By Barb Heiman, We Are HDSA, August 2011

Taking Control, by Karen Tarapata, We Are HDSA, August 2011

Nursing Homes: Information to Ponder, by Jessica Hancock, We Are HDSA, August 2011

Palliative Care in Huntington’s Disease, by Richard Dubinsky, The Marker, 2003

Choosing Home Healthcare Assistance, The Marker, Fall 2001

 

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Personal Stories:

Why I Give My Voice to HD, by Marie Clay, The Marker, Spring 2012

Why I Volunteer for HDSA, by Don Higgins, M.D., The Marker, Spring 2012

Giving Back, by Shana Martin, The Marker, Spring 2012

The DNA of Giving Back, by Kristen Powers, The Marker, Spring 2012

Why I am an HD Advocate & Volunteer, by Stacey K. Barton, MSW, LCSW, The Marker, Spring 2012

Why I Have Not Gotten Tested, by Lindsey Zan, We Are HDSA, November/December 2011

Testing, We Are HDSA, November/December 2011

Why I Got Tested, by Staci Cushenberry, We Are HDSA, November/December 2011

My Decision, by Laura Petruzzi, We Are HDSA, November/December 2011

Staying Active, Speaking, Helping Others, and Smiling, by Shana Martin, We Are HDSA, September 2011

One Man’s Story: Entering the Light, by Kenneth P. Serbin, We Are HDSA, September 2011

Adapting My House for HD, by Katie Moser, The Marker, Spring 2011

Progress Report: Living At-Risk, The Marker, 2003

Preimplatation Testing: One Family’s Story, The Marker, Fall 2001

 

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Physical Therapy/Occupational Therapy/Speech Therapy/Nutrition:

In the Thick of It: What you Need to Know about Thickened Liquids, by Ann Gaba, We Are HDSA, June 2013

Nutrition in HD - Make it A Matter of Taste, by Karen Tarapata, We Are HDSA, February 2012

Dietitians in Huntington's Disease, by Stacey Hoffman, We Are HDSA, February 2012

Occupational Therapy and Huntington's Disease, by Kate H. Lafont, We Are HDSA, January 2012

Safety in the Home, by K. Shelley Knewstep-Watkins, Erica Umback, Lara Wilkinson, and John Zenker, Caregiver's Corner, December 2011

Gait & Balance, by Deb Kegelmeyer, Sandra Kostyk, and Anne Kloos, Caregiver's Corner, November 2011

Augemented Communication Devices, by Kathleen Samulski, The Marker, Spring 2011

PT/OT & HD, by Suzanne Imbriglio, Caregiver’s Corner Webinar, March 2011

HD & Nutrition, by Anna Gaba, Caregiver’s Corner Webinar, January 2011

Early Intervention with Physical Therapy, by Lori Quinn, The Marker, May 2009

Gait & Balance Problems in HD: Assessment and Interventions, by Sandra Kostyk, Deb Kegelmeyer, and Ann Kloos, Toward a Cure, Winter 2009

Tai Chi for Individuals with Huntington’s Disease, by Nicola Briggs, The Marker, May 2007

Strategies for Speaking and Eating with HD, by Jeanne E. Thomson, The Marker, Spring 2001

Prolonging Quality of Life with Physical and Occupational Therapy, The Marker, 2000

 

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Planning:

Getting Help from JAN, by Anonymous, We Are HDSA, June, 2013

Huntington's Disease: Job Accommodations That Work, by Lisa Dorinzi, We Are HDSA, April 2013

Special Needs Trusts, by Stephen A. Lasky, We Are HDSA, April 2013

The Social Worker Perspective on Advanced Planning, by Hope Heller, Caregiver's Corner, February 2013

Brain and Body Donation in HD, by Joel Perlmutter, MD and Stacey Barton, MSW, LCSW, The Marker, Spring 2012

Hospitals: Admission and Discharge, by Lift Caregiving, We Are HDSA, January 2012

When and How to Talk About Driving, by Claudia Testa, We Are HDSA, July 2011

Managing Advanced Directives, by Karen Baker, We Are HDSA, July 2011

How Do You Handle Food Away From Home?, by Ann Gaba, We Are HDSA, May 2011

Decision-Making for Reproduction in Individuals At-Risk for HD, by Kimberly Quaid, The Marker, Spring 2011

Family Planning and HD, by Kimberly Quaid, We Are HDSA, April 2011

Planning Ahead-10 Tips for the Long Run, by Lisa Kjer, We Are HDSA, January 2011

Palliative Care & End of Life Issues, By Debra Blue, Caregiver’s Corner, November 2010

Hospice: Living Each Day in Comfort and Dignity, The Marker, May 2007

Planning for the Future, by Barbara Heiman, The Marker, October 2006

Is a Living Will Enough to Protect You?, The Maker, Fall 2005

Planning Ahead with Long Term Care Insurance, The Marker, 2004

Advanced Directives and End of Life Decision Making, The Marker, Fall 2001

 

 

 

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