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

This link is to a podcast 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 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):  The web site for Dr. Kimonis is:

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

 Dr. Chris Weihl, Washington University (St. Louis):  The associated web site is 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.

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 A nice overview of DNA and associated structures, mechanisms, and engineering.  An animated tutorial (high school level) on DNA structure.   An introductory to DNA structure part of an introductory biology course.  An animated outline of DNA structure.  An illustration of the double helical structure of the DNA molecule.  A description of amino acid properties.  A description chemical nature of amino acids with some illustration amino acid properties and functions.  The OnLine Mendelian Inheritance in Man data base from John Hopkins University for IBMPFD.  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 

The following links contain information regarding Paget's Disease of Bone:;;

The following links are for aging and how to deal with the varieties of problems:

 Medical alert systems:;

 Medical alert system reviews:

 Summary of drug side effects, recalls, alerts, health info:

 Assistance for the disabled with mental health issues:


 Understanding Social Security Disability and a benefits calculator


 Guide to Disability Claims, Insurance, and Benefits: 


 The Boomer’s Roadmap for Aging in Place: How to Prepare Today for your Senior Years:

 9 Ways to Prevent Falling at Home:

 Dealing with dementia (Alzheimer's):   

 The Benefits of Cooking with Alzheimer’s: A Caregiver’s Guide:

  Fire Safety Reference Guide:

 Cats and Seniors

 Canine Caregivers for Alzheimer’s and Dementia Patients

 Pets for the Elderly Foundation

 Older Adults & Anxiety

 A guide explaining the link between anxiety and addiction:

 Heart Attack Quiz

 Alcohol Rehab and Recovery

 Alcohol Treatment:

 Alcohol Addiction Treatment:

Periodic Table of Substance Abuse Drugs 

 Substance Addiction Rehabilitation

 Drug Rehabilitation (UK):

 Costs of rehab & treatment:

 Prescription Medication Problems: 

 Prescription Drug Abuse & Addiction:

 Addiction Rehabilitation for the Deaf/Blind:

 Warning Signs of Prescription Drug Abuse:

 How to get Better Sleep (when recovering from addiction):

 Data base on prescription and over-the-counter drug issues:

 UK Addiction help:

 Program costs, how to pay for care including insurance options:

 Information of medications and medical devices with serious complications:

 Source of information for persons seeking treatment facilities

 Information of medical and consumer safety issues:

 Ultimate Guide to Rehab & Medicare

 Assisted Living Regulation and Laws

 Senior Guidance (senior living assistance):

 Business Ideas For People With Disabilities:

 Learn about what the meaning to age in place and how planning now, regardless of your age:

 Insomnia and other sleep disorders: Depression and Sleep Disorders             Anxiety’s Effects On Sleep         Cognitive Behavioral Therapy for Insomnia

 Sleep deprivation:

  Simplifying online shopping for people with disabilities:

Consumer Safety Guide (equipment, food, supplements, etc.):

 Toilet Reviews:

 Reviews and Tips for Using Tools:

 Sewing Machine Buyer's Guide:

 Manual wheelchair Reviews:

 Mattress and Bedding Guide for People with Disabilities:

 Bed Sheets Reviews:

 Stop Fraud

 How to Prevent Credit Card Fraud

 National Center on Elder Abuse:

 Guide to Taking Legal Action for Elder Abuse in Nursing Homes

 Facts about Elder Abuse and Nursing Homes  There is also information about bedsores, which can occur at home.

 Elder Financial Abuse Guide:

 Nursing Home Abuse Hotline:

 An in-depth report on how to build the best diet for your heart's health.

 The 20 best heart disease calculators

 Exercise for Your Heart Health

 Alternative Medicine for Heart Disease

 Exercise is important, but injuries (especially when older and IBMPFD weakened) can be more serious than normal: Sports Injuries   

 Gardening for Beginners:

 Housing Tips and Advice from The National Aging in Place Council

 Home Security Providers:

 Fall Prevention: The Complete Guide to Home Modifications to Prevent Falls
 Selling a Home with Modifications for Older Adults
 Falls an Early Sign of Alzheimer’s
 Fall Prevention & Mobility: Practical Safety and Organization Strategies for Seniors
 How to Talk about End of Life Planning with Your Family
 Preventing Falls for a Person with Dementia
 Senior Fall Prevention: A Roadmap for Navigating Resources and Benefits

 Preventing Falls at Home

  Fire Safety:

  Causes and Risk Factors For Falls In Older Adults at

 The Best And Worst Bathroom Flooring For Aging In Place Safely

 Sarcopenia: 10 Keys to Keep Your Muscle Mass Up as You Age

 Dementia Care Dos and Don'ts: Dealing With Dementia Behavior Problems

 Exercise & Physical Activity: Your Everyday Guide from the National Institute on Aging

 The following link is for a guide on remodeling for disabled access:

 25 Tips To Make Home Safe For Seniors (Especially Those Living Independently)

 Home Modification Programs for Aging in Place Home Services  Aging in Place Home Loan Modification Programs

  The Fully Accessible Guide to Home Loans for People with Disabilities:

 Home Ownership for People With Disabilities:

 Home Modifications for seniors and/or disabled:

 Home Modifications for Seniors and People With Disabilities:

  For Seniors

 NIH Senior Health

  Health for Seniors

  22 Senior Health Risk Calculators for Healthy Aging

 Information and Resources for Seniors:

 Moving: Moving Tips for Seniors and People With Disabilities

 Discounts for Seniors:

 A Senior’s Guide to Healthy Eating:

 Senior Emergency Preparedness:

 The Complete Resource Guide for Sewing:

 Legal Resources for Seniors

 Veterans Benefits for Seniors

  Fraud Prevention Checklist for Seniors

 Making the Move to Assisted Living

 Keeping Seniors Safe with While Remodeling

  Disaster Preparedness for Seniors

 Advanced Care Planning

 Home Accommodations for Seniors

 Aging Veteran's Guide to Planning for the Future

 Tips for Seniors to Declutter and Organize their Home

Seniors with substance abuse problems:

 Seniors suffering from addiction:

 Elder Care Resources

 What is Elder Abuse and Elder Abuse Reporting?


 The Senior's Guide To Staying Safe Online and On Social Media

  The Best And Worst Bathroom Flooring For Aging In Place Safely

 25 Tips To Make Home Safe For Seniors (Especially Those Living Independently)

 Sarcopenia: 10 Keys to Keep Your Muscle Mass Up as You Age

 Dementia Care Dos and Don'ts: Dealing With Dementia Behavior Problems

 Exercise & Physical Activity: Your Everyday Guide from the National Institute on Aging

 Fall Prevention Tips for Seniors | A Home Design Guide  includes a printable PDF version

 Exercise & Physical Activity: Your Everyday Guide from the National Institute on Aging

 A Senior's Guide to Using Computers and Software:  A Senior’s Guide to Using Computers and Software

 Economic Security for Seniors Facts

 Home Safety and Security for Aging-in-Place Seniors

 Fire Safety Resources for the Disabled and Seniors

 Health for Seniors      Older Adults & Anxiety         Ultimate Guide to Rehab & Medicare

 Seasonal Affective Disorder and Sleep

 The Link Between Anxiety and Sleep Disorders

 How Mental Health Affects Sleep

Senior-Friendly Home Remodeling

 14 Ways to Help Seniors Avoid Isolation:

 Guide to Senior Safety at Home:

  Home Safety and Security for Aging-in-Place Seniors:

 Seniors & Drugs - NCADD  

 Mental & Physical Wellness in a Nursing Home

 Moving Advice for Seniors and People with Disabilities:

 Rental Housing Rights for Disabled Tenants:

 The Internet Low Vision Society:

 Home Solutions to Cope with Sensory Processing Issues and Sensitivities:

 Environmental Illness Resources:

 Keeping Seniors and Special Needs Individuals Safe Around Construction:

 Senior Home Improvement Assistance:

 When to Move to Assisted Living:

 Guide for Finding Credible Medical Information and Advice:

 Financing senior care costs:

 Consumer Safety Guide:

 Quit Smoking

 I have been opposed to smoking since the late 1950's, so some people take my stance on anti-smoking less seriously. Nevertheless, the data is more than sufficient to demonstrate the harmful effects on smoking and second-hand smoke, especially for those of us with IBMPFD (the mutation effects also cause problems with breathing).

 The following websites provide some help for those who want to quit:

 Freedom From Smoking® Online, or FFS Online, is a program specifically designed for adults who want to quit smoking.

 Quit Smoking for Good — The Best Quit Smoking Guide

 How to Quit Smoking

 How & Why to Quit Smoking:

 How to Quit Smoking - Ultimate Guide (scroll past ads):

 Concerns with Vaping:

 Ready to Quit Smoking:

 Possible Alternatives that Could Help

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 CBD products may help with anxiety and other conditions: for additional information visit: