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:

KimonisTeam2-3-15.MP3
http://www.kuci.org/podcastfiles/984/KimonisTeam2-3-15.MP3

  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 http://ghr.nlm.nih.gov/condition/inclusion-body-myopathy-with-early-onset-paget-disease-and-frontotemporal-dementia.

 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.

  https://globalgenes.org/

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: 

 https://www.genetests.org/search/search.php?search=ibmpfd&submit=Search&start=0

 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 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.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 

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.

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

 Summary of drug side effects, recalls, alerts, health info: https://www.recallreport.org/

 Assistance for the disabled with mental health issues:  http://sunrisehouse.com/addiction-demographics/physically-disabled/

 

 Understanding Social Security Disability and a benefits calculator  http://www.thesimpledollar.com/disability-benefits-guide/

 

 Guide to Disability Claims, Insurance, and Benefits:  www.disabilitydenials.com/guide-to-disability-claims/ 

 

 The Boomer’s Roadmap for Aging in Place: How to Prepare Today for your Senior Years: https://www.homecity.com/how-to-prepare-for-senior-years

 9 Ways to Prevent Falling at Home:  http://www.everydayhealth.com/longevity/future-planning/prevent-falls-at-home.aspx

 Dealing with dementia (Alzheimer's): http://www.seniorlivingspecialists.com/alzheimers-dementia-care/guide-caring-loved-one-alzheimers-disease/   

 The Benefits of Cooking with Alzheimer’s: A Caregiver’s Guide: http://www.culinaryschools.org/blog/cooking-with-alzheimers/

  Fire Safety Reference Guide: https://www.homesecuritylist.com/fire-safety-disabilities/

 Cats and Seniors     http://www.americanhumane.org/animals/adoption-pet-care/cat-behavior/cats-and-seniors.html

 Canine Caregivers for Alzheimer’s and Dementia Patients     https://www.rover.com/canine-caregivers-dementia-alzheimers/

 Pets for the Elderly Foundation     http://www.petsfortheelderly.org/

 Older Adults & Anxiety     http://www.adaa.org/living-with-anxiety/older-adults

 A guide explaining the link between anxiety and addiction: http://oceanrecoverycentre.com/mental-health/anxiety-and-addiction-guide/

 Heart Attack Quiz     https://www.acls.net/heart-attack.htm

 Alcohol Rehab and Recovery  https://alcorehab.org/

 Periodic Table of Substance Abuse Drugs    http://www.detoxlocal.com/resources/periodic-table-drug-addiction/ 

 Substance Addiction Rehabilitation  https://www.drugrehab.com/support/

 Prescription Medication Problems: https://www.drugrehab.com/addiction/prescription-drugs/ 

 Warning Signs of Prescription Drug Abuse:   http://www.drugrehab.org/the-45-warning-signs-of-prescription-drug-abuse/

 How to get Better Sleep (when recovering from addiction): https://www.nestmaven.com/sleep/disorders/addiction-recovery/

 Data base on prescription and over-the-counter drug issues:  www.rxdangers.com

 Information of medications and medical devices with serious complications: www.drugdangers.com

 Source of information for persons seeking treatment facilities https://findtreatment.samhsa.gov/

 Information of medical and consumer safety issues: www.consumerdangers.com

 Ultimate Guide to Rehab & Medicare     https://www.discoveryplace.info/rehab-medicare-ultimate-guide

 Assisted Living Regulation and Laws     http://www.alfa.org/alfa/ALFA_in_Your_State.asp

 Business Ideas For People With Disabilities: https://www.commercialcapitaltraining.com/business-resources/business-ideas/business-ideas-people-disabilities/

 Learn about what the meaning to age in place and how planning now, regardless of your age:   http://ageinplace.com/

  Toilet Reviews:  http://toiletadvisors.com/

 Reviews and Tips for Using Tools: http://www.toolversed.com/

 Sewing Machine Buyer's Guide:  http://www.sewingauthority.com/

  Manual wheelchair Reviews:  https://thoroughlyreviewed.com/health-beauty/best-wheel-chair/

 Mattress and Bedding Guide for People with Disabilities: https://www.bestmattressreviews.com/mattress-and-bedding-guide-disabilities/

 Bed Sheets Reviews:  http://bedsheetadvisor.com/

 Stop Fraud     http://www.stopfraud.gov/protect-yourself.html

 How to Prevent Credit Card Fraud

 National Center on Elder Abuse:   https://ncea.acl.gov/

 Guide to Taking Legal Action for Elder Abuse in Nursing Homes  http://www.injuryclaimcoach.com/elder-abuse.html

 Facts about Elder Abuse and Nursing Homes  http://www.nursinghomeabuseguide.org/  There is also information about bedsores, which can occur at home.

 Elder Financial Abuse Guide:   https://www.medicaresupplement.com/content/elder-financial-abuse

 Nursing Home Abuse Hotline:  www.nursinghomeabusesupport.com

 An in-depth report on how to build the best diet for your heart's health. http://umm.edu/health/medical/reports/articles/hearthealthy-diet

 The 20 best heart disease calculators http://www.calculators.org/health/heart.php

 Exercise for Your Heart Health  http://my.clevelandclinic.org/services/heart/prevention/exercise/exercise-for-your-heart-health

 Alternative Medicine for Heart Disease  http://www.everydayhealth.com/alternative-health/treatment-regimens/heart-health-and-alternative-therapies.aspx

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

 Gardening for Beginners: http://www.the10thcircle.com/gardening-for-beginners/

 Housing Tips and Advice from The National Aging in Place Council

  Preventing Falls at Home

  Fire Safety:  http://householdquotes.co.uk/keep-safe-from-fire/

  Causes and Risk Factors For Falls In Older Adults at NIHSeniorHealth.gov

 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:

 http://www.expertise.com/home-and-garden/home-remodeling-for-disability-and-special-needs

 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

 For Seniors

 NIH Senior Health     http://nihseniorhealth.gov/talkingwithyourdoctor/planningyourdoctorvisit/01.html

  Health for Seniors     https://www.usa.gov/health

  22 Senior Health Risk Calculators for Healthy Aging     http://www.calculators.org/health/aging.php

 Information and Resources for Seniors: https://safestars.org/senior-resources/

 Discounts for Seniors:  http://comparitech.net/seniors-discounts

 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:  http://forterustreatment.com/seniors-and-addiction/

 Elder Care Resources

 What is Elder Abuse and Elder Abuse Reporting?

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

 Causes and Risk Factors For Falls In Older Adults at NIHSeniorHealth.gov

 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

 https://www.goodcall.com/home/guide-helping-senior-citizens-stay-safe-home-2/  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

 Senior-Friendly Home Remodeling     http://www.homeadvisor.com/article.show.Senior-Friendly-Remodeling.8317.html

 14 Ways to Help Seniors Avoid Isolation: http://www.aplaceformom.com/blog/help-seniors-avoid-social-isolation-8-14-2014/

 Guide to Senior Safety at Home: https://www.alarms.org/guide-to-senior-safety-at-home/

  Home Safety and Security for Aging-in-Place Seniors:  http://www.securitygem.com/home-safety-for-seniors/

 Seniors & Drugs - NCADD  

 Mental & Physical Wellness in a Nursing Home

 Moving Advice for Seniors and People with Disabilities: https://www.sparefoot.com/self-storage/blog/19898-moving-advice-for-seniors-and-people-with-disabilities/

 Rental Housing Rights for Disabled Tenants: http://civilrights.findlaw.com/discrimination/rental-housing-rights-for-disabled-tenants.html

 The Internet Low Vision Society: http://www.lowvision.org/introduction_to_the_low_vision_g.htm

 Home Solutions to Cope with Sensory Processing Issues and Sensitivities: http://www.airfiltersdelivered.com/sensory-processing-disorder

 Environmental Illness Resources: https://www.cleanerindoorair.org/

 Keeping Seniors and Special Needs Individuals Safe Around Construction: https://www.bigrentz.com/how-to-guides/keeping-seniors-special-needs-individuals-safe-around-construction-sites

 Senior Home Improvement Assistance: https://eldercare.acl.gov/Public/Resources/Factsheets/Home_Modifications.aspx

 When to Move to Assisted Living: https://www.homecity.com/making-the-move-to-assisted-living

 Guide for Finding Credible Medical Information and Advice: https://online.arbor.edu/blog/guide-finding-credible-medical-information-advice/

 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. http://www.ffsonline.org/

 Quit Smoking for Good — The Best Quit Smoking Guide  https://quitday.org/quit-smoking/

 How to Quit Smoking  https://quitsmokingcommunity.org/

 How & Why to Quit Smoking:  https://tobaccofreelife.org

 How to Quit Smoking - Ultimate Guide (scroll past ads): https://www.jenreviews.com/how-to-quit-smoking/

 Concerns with Vaping: https://vapingdaily.com/health/

 https://mesothelioma.net/mesothelioma-asbestos-dangers-smoking/

 Possible Alternatives that Could Help

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