CMT Awareness Week marks completion of Bubble Organ

INSTRUMENTS

Completion of the Bubble Organ
post by Tim Phillips

Phew, I've done it. I've created a monster, I have a bubble organ in my midst.

I took the method for making one bubble module and did it 8 times (each time a little better so that the last bubble drone lasts about two minutes)! Each module has its own bubble tone governed by the length of its attached tube. It took a lot longer to build than I expected, but I'm more than happy with the result.

As you can see I have them all lined up from low to high, somewhat like a traditional organ. With a little more space, I'm looking forward to future variations in their positioning; perhaps scattered, in a giant circle, clusters, patterns - there is a lot of room for more exploration.

Enough with the words, I know you're really interested in how it sounds, so here are some examples of what it can do.

1. This is each of the bubbles in sequence, from high to low:

2. This is the Organ's debut as a performing instrument:

3. Just for kicks, this one shows how long a bubble module can go:

CHARCOT MARIE TOOTH

CMT Awareness Week
post by Tim Phillips

This week is the first ever National CMT awareness week in the U.S., so be aware!
Stemming from a whole stream of grassroots actions (this project being one), there has been enough momentum created to really try and raise national awareness to this disorder.

This is the website: www.wearethecmta.com

I feel confident that the CMTA have set up a very strong research program (STAR) that is making great progress, but I am convinced of this fact due to a fair amount of inside knowledge. The important accompanying task to the research is to create a public face for CMT, one that demonstrates the integrity and efficiency of the work being done, so that people unconnected with the disorder can also recognize the value of supporting this cause. (To see all I've written about the research, click HERE and scroll down).

The awareness week allows the CMTA to bring together all of the individual actions with bigger national events such as radio, television and internet segments, to voice a 'rallying cry' if you like. Hopefully it will create enough conversation to get some decent media coverage so CMT can start to become a household name.

As an interesting side note, I was contacted this week by the original maker of a bubble organ, Aaron Wendel, a stranger who by chance played a timely part in inspiring the 'CMT creates: music' project. Of his own accord, he had stumbled across my bubble organ on the internet and then wrote to offer his support for the cause. This was an exciting affirmation for the project and apt that it coincided with the completion of my bubble organ!

If you haven't told anyone else about this project or CMT, this is the week to do it. Please help us out and pass it on. In case you're wondering, I'm still very open to making more instruments if you're willing to donate more money! - DONATE HERE -

In the Pursuit of Pretty Shoes

INSTRUMENTS
Here it is, the first instrument to be finished (well as near as damn it),
#5 - The Texture Harp. (Tim)

Texture Harp
post by Meghann Welsh

I've discovered it's hard to describe the sounds of textures. "Talking about music is like dancing about architecture" as they say. So, I've used the generic "white noise", although technically incorrect, as my base sound descriptor, and applied modifiers to that. Let me know if you can hear the textures or describe the textures differently!

Currently, the strings have four different textures:

Waxed: Twine coated with bee's wax. Sound when rubbed is a sticky-smooth "white noise", or a squeal and squawk when more pressure is applied.
Grit: Twine coated with wood glue and sawdust. Sound when rubbed is a rough "white noise".
Fiber: Unaltered twine. Sound when rubbed is a soft-smooth "white noise".
Metal: Unaltered metal twine. Sound when rubbed is a hard-smooth "white noise", or a zipper-like noise if fingernails are used.

The strings hang from a frame that I made out of 1/2" EMT. Wye (Y) fittings at the top allow for the frame to be expanded to make room for more strings. The threaded pipe allows for the frame to be broken down and reconstructed pretty easily. I may still add a soundboard, but cans at the end of each string, acting as resonance chambers, are doing a pretty good job. Experimentation with piezo mics in process...

In addition to being rubbed, each string can be plucked.
In both rubbing and plucking techniques, the pitch of each string can be altered by changing the tension of the string (by applying pressure to the can).

Hopefully you can get an idea of the various sound possibilities with this late night demonstration:

CHARCOT MARIE TOOTH
I met Jessica through her blog and have very much enjoyed her writing, so I'm very happy that she has offered to contribute to this project! Our 1st New Yorker (though originally from California...) highlights the common fact that most people with CMT are not diagnosed for a long time, because even the medical world is not very clued in to this syndrome. (Tim)

My Story
post by Jessica Wells, a.k.a. Miss Pretty Shoes

Originally a So-Cal girl, I quit everything I knew in the Spring of 2008 to come to the Big Apple to chase my dreams! After a year of "pounding the pavement" of The City That Never Sleeps, I started experiencing unshakable pain and swelling in my left foot and ankle. I tried for 6 months to identify the cause of the pain, visiting podiatrists, chiropractors, orthopedic surgeons, and neurologists along the way--all to no avail! Finally, after a visit to an unrelenting and dedicated sports medicine doctor, we discovered a multitude of issues, including a torn peroneal ligament, severe arthritis, and a bone bruise.

After failed attempts at using natural healing methods like physical therapy and reduced strenuous activity, I was referred to a surgeon for a consultation. Immediately upon taking one look at my feet, he diagnosed me with Charcot Marie Tooth Syndrome, a progressively degenerative neuro-muscular disorder. Through my own extensive research, I learned I had most of the classic symptoms of CMT, though no other physician had ever taken notice to them (including an inexplicable propensity for broken bones, sprains, and other joint injuries; painful arches; an overwhelming dislike for running; a lifelong remorse for never fulfilling my potential as a professional ballerina; and a general sense of crabbiness without at least 8 hours of sleep every night).

Over the next few months, my surgeon (a.k.a. the mad scientist) and I formulated a treatment plan centered around progressive surgeries to strengthen my ankles, re-construct my feet, and to hopefully reverse the progression of this rare disease, beginning with the left foot first. And, in the midst of these physical challenges, I have also been forced to come to grips emotionally and mentally with the new found diagnosis of this debilitating, lifelong disease.

I am determined to overcome the challenges of CMT, all with the hope of someday again finding and putting on that perfect pair of pretty shoes . . .