on the Subject (in Blue) to Link to these Items:
Forms: Please use the linked survey form
provide research information. One form for
symptoms description has an
embedded link to e-mail to Drs. Kimonis and Weihl. Another form for Quality of
Life has an embedded link to Dr. Kimonis. Either
form may be printed and mailed.
Active research projects needing participants.
Embedded articles and links to sites to provide
information about DNA in general and this specific
mutation. Educational materials for patients,
clinicians, and geneticists can be found at Dr. Virginia
Kimonis web site at UCI.
various organizations that provide resources and information for help
with a variety of issues, e.g., aging, prescription drug
abuse, chronic pain, addiction, home modification. To the MDA and other research institutions that have information
that may help, as well as some specifics on Paget's
Disease of the Bone. Also, where you can participate by
using spare computer time for research.
There are approved treatments for Paget's Disease of the
bone, although none yet for the myopathy and dementia.
There are treatments for a number of the secondary
effects from IBMPFD, including blood pressure, heart
Information to assist caregivers handling the needs of
affected persons as well as support for caregiver
A list of substances that have helped me may help others. Dose and
frequency will vary by individual, so one should consult
a variety of sources and check one's own progress when
Exercise: Some ideas about what kinds of
exercise may help. Regular stretching, especially in a
Water Therapy Pool, is very important,
not just for the muscles, but also tendons and
Equipment: Some ideas on types of equipment
that may help and links to sources of the equipment. Tools
and aids make the
performance of tasks easier and allows one to continue
doing many of the things one either needs or likes to
do, with much less pain and effort.
Glossary: Some terms and definitions that are
pertinent to neuro-muscular diseases. This page is from MDA Quest
magazine. Also see
Glossary (from NIH) for a complete list of gene
related terms and
Newsletter: Electronic copies of the printed
newsletters provided by Dr. Kimonis. Dr. Benatar's
familial-ALS research newsletter is available at
www.als-research.org. Note, familial-ALS is
sometimes associated with mutations in the VCP gene.
Links to a source for genetic testing for mutations in
the VCP. CETT through UCI provides more
information about symptoms and how to obtain DNA testing
for the various mutation locations.
IBMPFD - Patients, Family, and Friends A private
Facebook group set up by Sarah Brumhard for a social
media presence. You must log in to Facebook to use.
questions, please e-mail