Huntington's Disease~ Jean's Sites


Request For Info on HD
Jean Miller Huntington's Disease Websites
HD Support Information
Purpose: A State-by-State listing of HDSA Chapters, Support Groups, Centers of Excellences, physicians, nursing homes, Hospices and other information.  Needs your input on what HD services are available in your city.  Has a  Swap/Trade/Sell section to list items that you no longer need that might help another HD family.
HD Caregivers Website
Purpose: A resource for all those caring for a loved one with Huntington's Disease.  Site established Oct. 2002 and is still undergoing construction and needs your suggestion, articles etc..  Some sections are available now.
All articles on this topic/one link
HD-Symptom Definitions
Purpose: Definitions 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.
HD Helpful Forms     Simple_book.gif
Purpose: Documents uploaded in Word format 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.
Purpose: List items;fund raising items to help send HD families from Hunt-Dis to HDSA's National Huntington's Disease Convention each year who, due to financial difficulities from living with HD, would not otherwise be able to attend.  Please use the HDSF Associate Amazon  Membership to order gifts to help raise scholarship funds!

Our Final Journey
Purpose: Provide families living with a terminal illness information on Estate Planning, powers of attorney, advance directives, guardianship, conservatorship, avoiding probate, providing for children, etc..
Juvenile HD Website
Purpose:  To provide information for families with a child with juvenile HD or one at-risk.Include at-risk, genetic testing/testing of children related symptoms and how to recognize/help, types of therapies, various medication and drug searches, surgeries, procedures used in testing, suicide, divorce, disabilities, assisstive technology, grief, ADD/AD-HD, support, links, benefits/insurance and a bio/my personal experience with Kelly.
Purpose: Information for kids/young adults living in a family with HD to help understand their loved one with HD or to recognize feelings they themselves may be experiencing/how to get help; how other
young people feel living with HD, HD support groups and information, links to games, crafts, fun learning sites, etc., some of Kelly Miller's poems, a Live Chat Room (need password-contact  Jean Miller) and a Message Board to talk with other young people living with HD.
Speaking Out~Living With HD
Purpose: Very moving and touching portrayal of how the devastation of Huntington's Disease affects the lives of our young children and adults living with the disease through a Question and Answer more!
Purpose: Yahoo message board for all families who have a child with juvenile HD to have a place to share their experience, seek help and offer support to one another.
Help CURE HD Free Greeting Cards   Purpose:Over 1,000 every day cards for almost any;occassion with the message "Help CURE HD" on each. Most popular are "Life", "Excuses" and "Inspirational" cards. These cards a free for any HD fund raising event.
Purpose: Hundreds of links to information for caregivers. UPDATE: This site has not been updated for quite some time.  As time permits, will include links on the newer HD Caregivers Website
Request For Info on HD
Question(s) not answered?  Try this auto-responder to submit your question and I will make every effort to try and find the answer for you either through one of the HD websites, an HDSA Chapter, Support Group, Center of Excellence, HD Social Worker, etc.