I never get tired of hearing or re-telling this story ==>> Jack Klugman, Henry Waxman, and Orrin Hatch
if you have a rare/orphan disease and want social/political/pharmaceutical action …
stop making publicizing your disease your end goal. You and the other 350 or 3,000 or 25,000 or 199,999 people with the disease will hardly be heard above the shouts of those advocating for funds for cancer, coronary disease, diabetes, HIV/AIDs and other diseases affecting many medically and/or politically.
And in the current system of new drug development, Big Pharma is going to be more interested in developing treatments for gastroenterological disease (heartburn), STDs (avoidable), erectile dysfunction, safer birth control, cancer, heart disease, and obesity.
Your 5,000 sufferers should collaborate with the 350 individuals with another disease and the 199,999 with another and all of the rest of them to be a large and huge advocacy group for encouraging change. Your illness group may not be the first to get attention if changes are made, but somebody will be and as treatments are developed for one rare disease they might also be applicable to other related rare diseases.
This is clearly a situation in whch cooperating with those with other rare diseases will ultimately yield better results for all than screaming ME FIRST on the Internet in social media.
The existing laws and administrative rules probably do not go far enough in encouraging drug companies to develop pharmaceuticals for rare and orphan diseases. Advocate for better incentives and decreased bureaucracy for developing new pharmaceuticals to treat a few thousand. Maybe even the staid Nobel Prize committee will even make an award to somebody who makes a huge research contribution that advances the development of treatments for a rare disease and top research universities will create endowed professorships for high talented physicians and others who study a rare disease.
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Challenge to All #Religous #Congregations and #Leaders: Rare Disease Outreach
There are more than 7,000 rare diseases in the world, almost all of which lack any type of medical treatment. Were every religious congregation in the world to “adopt” a disease and do what it can to help find and provide a cure for that one disease, it is quite possible that the hundreds of millions of people (in aggregate across all rare diseases) could be helped in small and large ways.
I think that it is very possible that organized religions can put away their ideological differences and work cooperatively through information sharing, advocating, raising monies, and demanding progress from governments and corporations to fight rare diseases. After all, most of these diseases are genetic in origin and more than 50% of those who suffer from rare diseases are children. And, central values in the organized religions are showing compassion, helping, and supporting those in need.
I am not naive enough to believe that religions, religious leaders, and religious congregations working together in small ways is enough to solve religious bigotry, the hot points in Jerusalem, or prevent future ethnic-religious cleansing by horrible people deceiving their own citizens. But let’s at least try to start in the small ways of learning about one or two rare diseases and pooling creativity, resources, and prayers for the energy and stamina to find cures. Religious congregations and their energy directed by the desire to help are almost unstoppable forces.
February 28 is Rare Disease Day.
It is also a day when the religious peoples of the world can unite to plan to make small and large steps to acknowledge and cure at least some of the rare diseases.
I pray that it will happen.
And should you not believe in organized religions, I hope you will nonetheless join in an organized search for effective treatments.
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#RareDiseaseDayUSA Feb 28 2014
Activities, statistics, and plans to impact policy in the United States. Click on either image for more information.
#RareDiseaseDay Feb 28 2014
Rare diseases are often overlooked in the public’s collective mind and the priorities of elected officials, at least in part because many do not know about the diseases and the lack of effective treatment for most.
Spread the knowledge. Click the image for more information.
READ THIS BOOK! A Practical #MindMap Tester
A Practical Mind Map Tester, the just-published book by Hans Buskes and Philippe Packu, is the most important book written about visual thinking and visual communication using mind maps since Tony Buzan’s seminal original work.
The book is clearly written and beautifully illustrated. A significant amount of relevant research was reviewed to guide the authors’ conclusions; such a scientific approach is almost unprecedented in this field.
The comments and examples in this wonderfully integrated book are a huge step forward in the use of mind mapping to develop, clarify, and communicate knowledge.
Let me repeat that visually.
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Easily Test “Dyslexic” Fonts
In a prior post, I discussed issues about fonts and their use in mind maps for people with varying types of cognitive impairment. In a second prior post, I showed examples of using free fonts thought to be useful for individuals with dyslexia.
I spent a lot of time today looking at recommendations about fonts. Generally there seems to be a general consensus that the following fonts may be useful for individuals with dyslexia.
- OpenDyslexic (one of three variations)*
- Lexia Readable*
- Lucida Grande***
- Comic Sans***
- Times Roman***
*free for individuals
***common and probably on your computer already
Another recommendation is to use a light (beige, pastel) background with a very dark text color (black, navy blue).
Finally, size is an issue with the general recommendation being that it is desirable that the font size be larger than usual.
Would you like to see how different combinations of fonts and color and size work. Click on the image link below and change the fonts, size, and colors and see what happens.
“Dyslexic” Fonts in #MindMaps: An Example
In a prior post, I discussed issues about fonts and their use in mind maps for people with varying types of cognitive impairment. This post contrasts an original mind map from another recent post to four variations which use different “dyslexia” fonts. Note that the four dyslexia fonts are all available without cost to individuals.
First, the original mind map with an “artistic” professionally drawn font. There is no claim that this font helps or hinders those with dyslexia from reading the map rapidly and accurately.
Click images to expand.
Here is the same mind map in three variations of the OpenDyslexia font (free).
The final example uses the font Lexia Readable, another free font created for those with dyslexia.
Of the four “dyslexic” fonts, I prefer the final variant (Lexia Readable). But I do not have dyslexia and so cannot say anything about how well it will work for even one individual (me).
None of the fonts illustrated nor a quite expensive professional one (Dyslexie; not shown here but very similar to the free OpenDyslexia) has strong empirical evidence that it helps those with dyslexia read faster or with more accuracy. Some tiny and flawed studies do suggest efficacy for these fonts for dyslexia, but I do not take the evidence seriously and much more study is needed.
[Note that this post has NOT addressed the issue of whether curved branches should be used or avoided for maps that may be used by dyslexics.]
What do you think?
My personal plan is to provide a second version of some of my mind maps that eliminates curved branches and uses the Lexi Readable font. I do not know if these changes will make the map more readable for those with cognitive impairments (primarily dyslexia), but it certainly does not hurt to put in a little extra effort.
“Personal Fonts” in #Mindmaps and Usefulness for the Cognitively Impaired
Hans Buskes and Philippe Packu in their recent book on mind mapping raise the issue of the best fonts to use in mind maps for clarity and usefulness.
I tend to agree with their suggestions BUT ONLY when the mind map is developed for general communication to large groups of people with whom the mind map developer probably has little direct connection. This is the typical situation for mind maps shown in books written by “mind mapping experts” for general groups of readers. It is the typical situation in management consulting and professional presentations.
- my notes are for me; your notes are for you
- my to do list is for me; your to do list is for you
- my personal feelings are for me
- my life history is for me and my family
- my social history is for me and my friends
- my creative work is best done with small groups of peers, friends, and colleagues who communicate with one another in a relaxed and informal way
Makes you wonder whether developing mind maps with “standard business” fonts such as Georgia or Tahoma or Arial or Times Roman is an especially effective way to make maps primarily for your own use, especially if you have any types of cognitive impairment or special cognitive needs.
I am much more motivated to work on maps and refer to them and plan from them and keep my schedule in a mind map if the fonts in the mind maps do not look like I have urgent BUSINESS PRESENTATIONS to make.
I like to kick back and use a large number of different professionally developed “hand-printed” fonts which I often match to the topics/content of the map and whatever gets the creative juices going.
You can see lots of examples of using fonts to inspire creativity in the variations among the mind maps presented in the posts in this blog.
Now, let’s generalize these concerns to people with various kinds of cognitive and perceptual impairments (mild cognitive impairment or MCI, early-stage dementia, later stages of dementia, typical aging, learning disabilities, and illness).
Someone with mild cognitive impairment developing a mind map to help in planning an event or making a decision or scheduling may find it much easier, productive, and creative to work with mind maps in various unique fonts appropriate for the topic, the individual’s preferences, or for novelty rather the usual “readable” business fonts. Many no longer work or ever had the opportunity to work among those who develop “management” presentations. “Personal” fonts in mind maps and other visual thinking methods may make them more effective as planning, thinking, and memory tools, especially for those with cognitive impairment.
Of course this is my conjecture based on my own preferences and knowledge of some of the relevant literature on neurodegenerative diseases. To the best of my knowledge no studies have ever proven what the best fonts are for mind maps for different types of people with different types of uses for maps on different days of the week in the winter or summer or even when the moon is full.
To push my creativity, I want my maps to look hand-printed and personal and not like a business presentation or a doctoral dissertation.
Now at the extreme you could always use one of the free services on the Internet for developing your own personal font(s) based on your own printing or cursive writing! I tried. The results are below.
I personally intend to stay with commercially developed hand-printed fonts by pros and try to pass those off as “my own” handwriting. I am sure that I can read their “handwriting” a lot better than my own.
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Itinerary Maps: An Example
Another simple #mindmap application.
What I did on my winter vacation.
[I waited until I got home to draw the map!]
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3d version of the above map.
MAPVOCACY = Advocacy Expressed in a #MindMap = VISUAL ADVOCACY
I wish somebody had taken notice of the things I said in the past 45 years of my life about
- universal human rights
- healthcare reform
- free education
- equal opportunity
- equal access
Better late than never, here is a new tool that might help ensure that people listen …
Excellent New Book on Mind Map Testing Finally Released by Buskes and Packu
I’ve been waiting months to be able to purchase the new book “A Practical Mind Map Tester” by Hans Buskes and Philippe Packu.
Dr Buskes and Mr Packu are, in my opinion, two of the “top 100” most creative and influential mind mappers currently working anywhere in the world. The new book does not disappoint as the authors address the difficult question of “what makes a mind map a good mind map?” with an unique approach and much new thinking on the topic.
I will be posting a very detailed review of the book later as I have a lot of interest in this topic. But don’t wait for my review; the books is currently available on the Apple iBooks Store and is a must-read for mind mappers and those who would like to use mind maps effectively.