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.
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
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.
Understanding Behavior in HD - Dr. Jane Paulsen
resource from Dr. Paulsen which addresses the various
aspects of behavior in someone with Huntington's Disease.
Includes tips on how to help. The next "Bible of HD'
to the Physician's Guide to The Management of HD
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
Purpose: Provide families living
with a terminal illness
information on Estate Planning including wills, powers
of attorney, advance directives, guardianship,
conservatorship, avoding probate, providing for children,
etc.. Links to information for the Patient with a terminal
illness, the Caregiver and the Family. Information on
Legal Advice, Insurance, Employment Issues (flex scheduling,
Family Leave etc), Financial Planning and tools, Divorce
Issues
Day care centers, assistive living facilities, nursing homes,
sensitive and informative information on the end of life,
grief and support etc.
OTHER PUBLISHED WEBSITES
Help CURE HD free Greeting Cards
Purpose: Over 1,000 every day cards for almost any
occassion. Most popular are "Life", "Excuses" and
"Inspirational" cards
Juvenile
Huntington's Disease Message Board
a child with juvenile HD to have a place to share their
experience, seek help and offer support to one another.
Huntington's Caregivers Web Directory
Has not been updated in some time due to Webmaster's
(Olav's) care of wife with HD who recently passed away.
