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Advocacy/Media/Donation Info
Jean Miller's
Huntington's Disease websites
Use me to learn about HD!
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.
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 HD Helpful Forms 
Purpose: Documents uploaded in ose: 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. Below are sample documents from this site.
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. A message board has been added for those that want to contact others in the same situation.
Understanding Behavior-Dr.Paulsen
Purpose: Provide people living with HD this excellent resource from Dr. Paulsen which addresses the various aspects of behavior in someone with Huntington's Disease. Includes tips on how to help. This is the next "Bible of HD' to the Physician's Guide to The Management of HD. Here are the chapters:
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OTHER RELATED INFORMATION:
Kids-Young Adults HD
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 me) and a Message Board to talk with other young people living with HD. Below are a few of the topics on this site:
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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 format....plus more!
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Purpose: Documents uploaded in ose: 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. Below are sample documents from this site.
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Hunt-Dis HD Convention Scholarship  Purpose: List items fund raising items to help send HDfamilies 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.
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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.. Here are a few of the many informative sections from this site:
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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. You can order the CD with the cards on the Hunt-Dis HD Convention Scholarship website.
Fast Connection to Categories
| This website is only to use as a link to the following HD
related 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.
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. A message board has been added for those that
want to contact others in the same situation. .
Kids-Young Adults HD
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 me) and a
Message Board to talk with other young people living with HD.
HD Helpful Forms
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.
Hunt-Dis Scholarship Fund Raising Projects
Purpose: List items for sale to raise funding to send some people
from Hunt-Dis to the HDSA National Convention each year. Items
included are Carmen Leal books/CD's, original artwork by our own
HD Artists Gayle Kingsbury and Lou Wilkinson, Calendars by Sue Leck,
the Non-Chew Cookbook and the CD of all the Help CURE HD
greeting cards (which can be used for HD fund raisers cards,
calendars, T-shirts....whatever).
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