A natural history study about one patient with IBMPFD (VCP disease:, ALS14)

 This link is to a pod cast from KUCI radio program "Ask a Leader" on 3 February 2015, hosted by Claudia Shambaugh,  containing several interviews, primarily with Dr. Virginia Kimonis:


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

 NIH (National Institute of Health) provides some information at


 The hIBM/ARM web site contains information about a similar mutation, with similar symptoms to IBMPFD.

 The http://www.1800wheelchair.ca/news/post/muscular-dystrophy-information.aspx contains information about various inherited "muscular dystrophies"                                    (not including IBMPFD), with links to various other sources of information.

 The 215th ENMC International Workshop produced a lay person report on the meeting and intended actions.

 The World Community Grid allows you to donate your idle computer time to create the largest volunteer computing grid benefiting humanity. I have been participating, with no problems, for the Help Cure Muscular Dystrophy project, which may have some research benefits for IBMPFD.


Global Genes™  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations. To Eliminate the Challenges of Rare Disease, we build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.

    NIH Gene Tests

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. Go to the research page for more information.

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

Drs. Kimonis and Watts have posted a paper that is a very comprehensive overview of IBMPFD: 


 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 California, Davis is 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 link ranks and rates the 50 states for topics such as community accessibility, economic independence, access to specialized healthcare,  independent home living, and availability of disability benefits. http://www.rankings.com/best-states-disabilities/

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.

 The Structure of DNA  Watson & Crick

 http://www.jamesbootcamp.com/articles/an-overview-of-dna.html A nice overview of DNA and associated structures, mechanisms, and engineering.

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

 http://www.biology.arizona.edu/biochemistry/activities/DNA/DNA_intro.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.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.

 Study (with flies) on effects of VCP Inhibitors