When two working VWs meet

Two VW women working on different projects, yet both using their vintage 1971 VW buses to tell stories, met at San Jose State University on 23 April 2012.

Image

Copyright by Julia Weber 2012. Thanks for permission to re-post this photograph.

Here you can see Julia Weber’s ‘Mr Orange der Story-Bus’ and Carole Brown’s ‘The YesWeCan CamperVan’ getting close and sharing some thoughts on future possibilities!  Maybe they’re talking about where to drive together …. if the ladies agree that is ..

 

Updates and wishes

I’ve been busy so apologize for the absence here. Here’s some things we’ve been doing in preparation for our cross country drive and our awareness campaigns …..

The YesWeCan CamperVan passed its Massachusetts inspection last week and is in fine health. My VW is now sitting outside here on Cape Cod awaiting signage for our trip across country.

I have been working on the wording for the sign including a new web name that is easy to read for passersby and easy to memorize. Along with that goes the design of a new website to feature the mission of our drive and our campaigns for various causes, as distinct from this blog that will refocus on our classic Volkswagen and stories on the road for our original VW enthusiast readers and travel aficionados.

I’ve also been doing some background research into auto-immune diseases and written a couple of press releases and set up a few information events here on Cape Cod to take place before I leave mid October.

Plus I’ve been looking at an alternative route from Massachusetts to Oregon, now that I’m leaving later; one which is further south to increase the chances of better weather and improved visibility of our message. And with that goes making new contacts to see about possible meet ups along the way.

If I could have one wish right now, it would be to find a fellow adventurer who would like to drive with me. Someone who loves taking photos and writing, is laid back, okay with last minute changes due to unseen opportunities and who has an innate curiosity and joy of life. Not asking for much! Oh and did I mention who has the money to travel for a couple of months?


Could this be our route for “MG Awareness” road trip?

CLICK HERE for larger map http://mapq.st/nKlW9W

I guessed that if I did a zigzag route it would be about 6000 miles to Portland, and this shows around 6200 (and there’s more places to add in California yet).

This is the first draft of my route, so there’s time to ask us to call into see you. And/or if you are close to any of these cities or anywhere close to the route and you would be happy to see me and The YesWeCan CamperVan, please comment below so I know!!
Thank you and Cheers!

Creating a blog

If you would like to create your own blog on the internet, whether it’s about your own adventures and causes in the world (like mine here) or about any subject at all, the starting point is deciding whether you’ll use one of the free design and publishing platforms out there like WordPress, Typepad, Blogger, Blogit, My Space etc, to create and host your design, or design and host one yourself.

Thousands of people are using the free platforms such as those mentioned above.

Yesterday I was reading a post about the growth of WordPress and this statement within it made me smile so much that I decided to add my comment to the 85 others on the site to voice my support, as follows:

Awesome!!!
Your statement: “WP.com is different from every other social platform out there because in addition to giving you ownership of your data you get ownership of the code running your data as well, you could run the same Open source software yourself, and in fact we’ll even help you do it.”
… says it all. THANKS SO VERY MUCH.
Carole Brown and The YesWeCan CamperVan

I then watched this video of WordPress co-founder Matt Mullenweg
http://videos.videopress.com/9ujY295r/matttalk_hd.mp4

….. and then I researched some more about current blog platforms and popularity and found this table of the top 20 Blogs on the internet (by readership) and the software that they use.
Where did I start my research? Wikipedia, of course:

source: Wikipedia – http://en.wikipedia.org/wiki/Blog_software

Apparently, today, according to Mashable, WordPress is the most popular blogging platform with 54,283 of the top million sites on the Internet using it, including Mashable. I’m certainly very thankful to WordPress for providing a wide array of wonderful template designs. I chose one called ‘Digg 3 column’ to make this blog look more like a website (thank you WP Designer) and the tools within WordPress then gave me added flexibility within the template to add more content and play with the style.

I am deeply grateful to WordPress and all the open source programmers for helping me spread my messages via this platform in such a professional way … and for also helping me talk about my plans for my road trip for MG Awareness and spread he word about this little known disease.

I’d love to hear from other readers about which blogging platforms or software you prefer …. and also please share the links to your blogs so we can read each other’s news and views.

Thank you.
Happy blogging :)

our Tillamook conversation

THANK YOU TO OUR READERS HERE FOR YOUR RECORD BREAKING NUMBER OF COMMENTS ON OUR EARLIER BLOG POST

and ALSO TO  OUR FACEBOOK PAGE FRIENDS COMMENTS.  …. see below ….

THEN WE COMMENTED ON THIS ONGOING CONVERSATION ….

ARE TILLAMOOK LOOKING ENCOURAGING ?

IT SEEMS SO …

I’ve just got to get up courage now to write another proposal. Wish me luck this time. THANK YOU 🙂

Midwest responsiveness

I’m trying to work out my itinerary for the trip from Massachusetts to the west coast. So far I’m not even sure about the route, since it depends on which VW clubs I can get most support from for the MG Awareness campaign.

Interestingly the most responsive MG charity in the nation has been the Kansas City, Missouri, based MG Association and the most responsive VW Club, is one called the Mo-Kan VW Club, which stands for Missouri-Kansas.

Also interesting, is that if I were to head from my base in Massachusetts to San Diego, California (for example), Kansas City just happens to be almost exactly half way as you can see here …

Possible route from Cape Cod, MA, to San Diego, CA passing through Kansas City, MO

Now is this just a coincidence or is some higher power operating here?

What do you think?

THE REASON we will be driving across America in 2011

When I discovered the following important facts and statistics on AUTO IMMUNE DISEASES on the AARDA’s website, I simply had to share them with you. They show how very important it is that we spread the word about MG and other auto immune diseases.

Autoimmune Disease … is a major health problem

• The National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune disease and that the prevalence is rising.

• Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.

• Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years of age.

• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.

• Commonly used immunosuppressant treatments lead to devastating long-term side effects.

The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.

Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients. 

  … faces critical obstacles in diagnosis and treatment:

• Symptoms cross many specialties and can affect all body organs.

Medical education provides minimal learning about autoimmune disease.

• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.

• Initial symptoms are often intermittent and unspecific until the disease becomes acute.

• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed.

  … surprising statistical comparisons with other disease groups

• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.

• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).

NIH research funding for AD in 2003 came to $591 MILLION. In comparison, cancer funding came to $6.1 BILLION; and heart and stroke, to $2.4 BILLION (source: NIH).

• The NIH Autoimmune Diseases Research Plan states; “Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.”

• According to the Department of Health and Human Services’ Office of Women’s Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women’s Health Information Center.

 With THANKS for these statistics from AARDA

the AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION Inc

 (http://www.aarda.org/autoimmune_statistics.php)

——————— END OF PUBLISHED STATISTICS ———————


COMMENTS BY CAROLE BROWN

  • I have put in bold the facts that struck me most. So few people know about, and so little money is spent on, autoimmune diseases, compared with cancer and heart disease. Yet AID (Auto immune disease) affects far more people.
  • My mother, Gladys, had MG (Myasthenia Gravis) which is an auto immune disease, for 51 of her 71 years. For this reason and because more people need to know about this and other AI diseases to help them get diagnosed more quickly, I am driving my vintage VW camper across America from Massachusetts to Oregon in late 2011 to draw attention to and ‘put MG on the map’.
  • Please help me spread the word by:
    LIKING the Facebook page for my 1971 VW, by clicking on its name The YesWeCan CamperVan

    SUBSCRIBING to this blog by going to the top right corner and entering your email address so you can receive new posts by mail

THANK YOU for reading, and if you SHARE this post, please COMMENT below to let us know, or COMMENT anyway! 🙂

Driving to draw attention to important causes like MG and other auto immune diseases

June is MG Awareness month

Myasthenia Gravis Awareness - A teal blue ribbon

Please tell all your friends that June is the official month for MG Awareness. Together let’s raise the visibility and compassion for people with this disease.

MG – Myasthenia Gravis – is a largely ‘invisible’ auto-immune disease because of the low level of awareness amongst medical professionals and the general public. I’m hoping to change that by using my ‘attention-getting’ vintage VW to attract attention to the cause of ‘putting MG on the map’.

If you’d like to find out how you can help, please email me at caroleiod@gmail.com or re-read the post A Cause for our New Year.

Two good sites about MG on the internet are:

MGFA – MG Foundation of America which supports research, medical education and patient care – http://www.myasthenia.org/

MGA – MG Association of Kansas City whose Facebook group is the largest support group for patients and their friends wherever they are located – website at http://www.mgakc.org and Facebook group at http://www.facebook.com/mgakc

If you know of other helpful websites, please add them in the comments box below.

Also please remember to keep telling your friends about this blog and our Facebook pages, so that we can get more supporters for this cause and partners for our coast to coast roadtrip for MG right across America later this year (https://yeswecanjourney.wordpress.com/2011/01/29/a-cause-for-our-new-year)

IDEAS to get attention for our Cause “MG awareness”

Thanks to Moses’s suggestions in the comment section of our post ‘Summer for a Cause – in Provincetown, Cape Cod, the ideas on how to promote our cause while we’re on Cape Cod this summer are beginning to flow.

But ideas are only as good as the way they are received, aren’t they?

We’re also thinking about how to gain support for our Drive across Americawhich will start in late Fall this year. We need your help on how to attract attention to this very important cause, too. So far we’ve come up with a T Shirt ‘draft’ for testing and the feedback has led to more ideas. Now we need YOUR VOTE!

will you join us on the road and help put MG on the map?

MG = Myasthenia Gravis; spread the word

Would you kindly help us find out which of the ideas we’ve had so far are most popular, by casting your vote?

To do this, click on the blue link below to view our Poll and then select your favorite ideas from those shown. Only vote for those that you like. 

AND if you have any ideas that are not listed, there’s a space to add them at the end of the Poll, or you can add them in the comment box at the very end of this post.
Please also support our Cause by clicking the icons below to add this post to your Facebook wall or Tweet it.

MANY THANKS x

Which ideas are best for promoting our drive to put MG on the map? Choose as many as you like

(polls)

Summer for a Cause – in Provincetown, Cape Cod

My headline reads “it’s the year to put MG on the map” and June, which is MG awareness month, is approaching very fast.

Now that I’ll be spending the summer in Provincetown, Massachusetts, I’m wondering if I can get permission from the town to park The YesWeCan CamperVan in a place where all the tourists can see us and promote our cause?

It would be great to brainstorm ideas here on how to get the public’s attention for a disease most have never heard of. Can you please comment below with your thoughts and suggestions?
Also add slogan ideas?

THANK YOU.

For example, maybe we can sell window stickers saying something like:

  1. join the drive for MG
  2. put MG on the map
Or bumper stickers, with slogans like:
  1. slow is good – love Vintage VWs and people with MG
  2. support little known causes like MG (Myasthenia Gravis)
  3. my auto is driving to get attention for auto-immune diseases
WE NEED YOUR INPUT PLEASE x