Dear Parents: My name is Claire Richardson and I am presently completing my clinical doctoral studies in occupational therapy through Creighton University, Nebraska. This is the second letter I have posted this year (about pieces of research being conducted) and I am once again appealing for help with my research into Adrenoleukodystrophy and Occupational Therapy services.
The Study: This will be a qualitative, interview based study pertaining to the experiences of this diagnostic group, and it is my hope to work with parents and patients diagnosed with ALD. I am looking specifically at:
1) The disease process and how the illness presents in ‘real life’
2) How the disease changes over the course of time
3) What functional impacts this has on day to day life on a functional, practical and emotional level
4) What would help to best deal with these changes over time
5) What services are commonly received, and how easy are they to access
6) What services are commonly lacking
» View Letter from Claire
For more information on Claire's Study, please contact Claire Richardson.
Email: crichar8@twcny.rr.com
Phone: 315-244-9937
The most ambitious form of treatment for AMN patients
to date is the quantification of movement impairments.
The
purpose of this study is to measure the time course
of sensory loss and weakness and evaluate treatments
in people with AMN. This is being done through
the development of tests that are sensitive enough
to detect defecits and track small changes in
sensation and strength over 6 months to a year.
Secondly, the further aim is to determine the
relative contributions of sensory loss and weakness
to balance and walking. Previously, doocumentation
of AMN progression relied upon clinical observations
and subjective rating scales that required 4 to
5 years to show change. This has made it difficult
to evaluate small changes in sensation and strength,
and has delayed assessment of therapeutic interventions...
» View Study
Lorenzo
oil therapy trial in adrenomyeloneuropathy progress
report February 15 2006.
This is a progress
report on the Lorenzo Oil Dietary Study for the
treatment of Adrenomyeloneuropathy that is now
being conducted at the Kennedy Krieger Institute
and the General Clinical Research Center at Johns
Hopkins Hospital. This study uses Lorenzo Oil,
which when combined with reduction of fat intake
lowers, and if done carefully, reduces to normal
the levels of very long chain fatty acids in the
plasma of patients with Adrenoleukodystrophy,
including those with the Adrenomyeloneuropathy
(AMN) form of the illness. The question is whether
lowering of these levels helps patients with AMN.
» View Study
To
participate in this or other motion related studies
regarding AMN, please contact Kim Hollandsworth
at The Kennedy Krieger Institute by calling:
(443) 923-2772.
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