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
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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...
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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.
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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.