The following links go to other web sites or e-mail contacts that may have useful information: 

  The Muscular Dystrophy Association is a prime place to locate information for a variety of issues regarding neuro-muscular disorders.

 

 

  There are a number of universities that are performing research into various genetic diseases, as well as the basics of what and how DNA works.  In some cases, one can participate in the research, e.g., provide DNA, muscle samples, which helps facilitate the research.

Dr. Virginia Kimonis, University of California (Irvine):  vkimonis@uci.edu  The web site for Dr. Kimonis is: http://www.ucihs.uci.edu/pediatrics/drkimonis/index.shtml

Dr. Giles Watts, Harvard Medical School (Children's Hospital):  gwatts@enders.tch.harvard.edu 

Drs. Kimonis and Watts have posted a paper that is a very comprehensive overview of IBMPFD:  http://www.geneclinics.org/query?dz=ibmpfd

Dr. Charles Smith, University of Kentucky (Lexington): csmith@mri.uky.edu

Dr. Chris Weihl, Washington University (St. Louis): weihlc@neuro.wustl.edu  The associated web site is http://www.neuro.wustl.edu/neuromuscular/index.html A link to the NEUROMUSCULAR DISEASE CENTER at Washington University, St. Louis, MO  USA

The University of Kentucky (Lexington) and the University of California, Davis are also doing research  I had a brain MRI performed at UK regarding the frontotemporal dementia aspect; UC Davis performed some checks on my heart.

The following links are to sites on the web that contain educational information.  In many cases the initial link will connect to other sites that contain additional information.

http://molvis.sdsc.edu/dna/index.htm  An animated tutorial (high school level) on DNA structure.

http://www.blc.arizona.edu/Molecular_Graphics/DNA_Structure/DNA_Tutorial.HTML  An introductory to DNA structure part of an introductory biology course.

http://www.johnkyrk.com/DNAanatomy.html  An animated outline of DNA structure.

http://www.accessexcellence.org/RC/VL/GG/structure.html  An illustration of the double helical structure of the DNA molecule.

http://www.russell.embl.de/aas/  A description of amino acid properties.

http://web.indstate.edu/thcme/mwking/amino-acids.html  A description chemical nature of amino acids with some illustration amino acid properties and functions.

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=167320  The OnLine Mendelian Inheritance in Man data base from John Hopkins University for IBMPFD.

http://genetests.org/  A publicly funded (NIH) medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.

The following links contain information regarding Paget's Disease of Bone:  http://arthritis.about.com/od/pagets/Pagets_Disease_of_Bone_Cause_Diagnosis_Symptoms_Treament.htm;

http://adam.about.com/encyclopedia/infectiousdiseases/Pagets-disease.htm; http://arthritis.about.com/od/pagets/p/paget.htm.