Outta Tsai't!

I would like to give a little blog-love to my [Facebook] friend and a fantastic artist Francis Tsai. I came to know him through the ALS community and very soon became a fan of his art. When I learned he was selling prints online to help finance his care, I purchased a couple.

The first one I purchased was one he did prior to onset called "Trixie":

This was a gift to a friend who collects pin-ups. My next purchase was a much more recent one called "Horned", which sports Francis' motto "Adapt - Survive - Prevail":

The thing I really enjoy about "Horned" is that it completely (and very literally) illustrates Francis' motto. Not content with just fading away, he got a computer and some software and created it using only his eyes!

Francis truly exemplifies the willpower of PALS and the clever use of technology to overcome the physical limitations which come with advanced ALS. A person is the result of his/her mind, NOT the physical body. With a little willpower and some appropriate technology, PALS retain purpose and personal productivity and quality of life remains high.

Surf on over to Francis' DeviantArt and StorEnvy sites (linked in the images above) and check out his art. While you're there, purchase a couple of prints. The money goes to a worthy cause and they make great gifts!

PSAwesome

On Monday of last week, this excellent PSA was released by Team Gleason. It was shown on the big screens inside the Superdome but needs to be shown repeatedly on major network television (ie ABC/CBS/NBC). Please watch, share with friends, and send to your local network television stations. This is the kind of message that needs to get in front of the eyeballs of America. This is the celebrity action we have been asking for. Now let's do our part in getting it out there.

Sugar Smack

Sugar, Sugar (The Archies - 1969)

I am not a real "food crusader". I eat a lot of meat and drink my share of alcohol, and didn't mind tossing down the occasional fast-food burger or pizza. But since the late 20th Century a shift began toward the use of fructose as a cheap sweetener. Instead of cane sugar, manufacturers started using high fructose corn syrup (HFCS) to sweeten things like beverages (ever notice how Coca-Cola tastes better in other countries? It ain't just the glass bottle, son...). Not only is this highly-subsidized sweetener cheaper for manufacturers, it reacts hormonally different in the body from regular glucose sugar.Fructose does not provide the same feeling of satiety nor does it calm the pleasure centers of the brain responsible for food and reward seeking.

HFCS is now found not only in candies and other common sugary foods, but it is being added to EVERYTHING. You can find it in nearly every snack food such as chips, to condiments, to even sliced loaf bread! It's not very difficult to draw a correlation between the new ubiquity of HFCS in food and the growing obesity/diabetes issue in America. And don't think the food conglomerates aren't aware of the power of this addictive ingredient.

So why am I bringing this up on a blog about ALS and related issues? Eventually PALS will require a PEG tube for adequate nutrition. The formula given for use in the PEG is loaded with HFCS. In fact, it's in the first 3 ingredients. HFCS is the way the manufacturers boost the calorie density of the formula. My own personal experience with PEG formula is that it ended up crashing my pancreas. I was in such a diabetic shock that the doctors actually said that I might not survive the night (hogwash, I say!).

I struggled for a few weeks with my new diabetic condition. Finally I said enough to the drugs and insulin injections and started having real food pureed with fortifications such as milk products, avocados, and other vitamin supplements. Getting off that formula was the best health decision since getting my vent. I urge all PALS to eschew formula and use real pureed food. Getting a healthy diet isn't hard at all.

The ALSETF

As my readers may know, my posts this year have been a little farther and further between. I have been working on some projects. Hopefully one or more can make a real difference for PALS. It's time to talk about one of these projects: The ALS Emergency Treatment Fund.

The ALSETF is about bringing treatments in late development (post-Phase 2) to ALS patients. Right now there is no hope for the majority of living patients because over 50% do not qualify for clinical trials. For a newly diagnosed patient, the odds of living to see a drug approved which is starting trials at the same time is about 10% (actually much less considering the historical approval rate of ALS treatments). However, with recent advances into the nature of ALS, certain drugs have been developed which show real promise for treating at least a subset of PALS. More are planned to enter trials in the United States very soon. We at ALSETF mean to get that hope ASAP to PALS who are currently living.

ALSETF is a 501C3 non-profit organization with the mission to partner with government and industry agencies to enable Expanded Access Programs. Expanded Access Programs (EAPs) are FDA authorized programs that permit the use of yet-unapproved drugs under medical supervision, in specific cases where those drugs are in late stages of development and have shown preliminary evidence of safety and efficacy. EAPs are only for immediately life threatening conditions for which no effective approved therapies exist. We have open communication with the FDA's Office of Neurology products for guidance on EAPs involving investigational drugs for ALS. We also maintain open discussion with clinical leaders on the best practices for EAPs, as well as with certain pharmaceutical companies with drugs in trial and in the pipeline.

Our focus right now is to raise up to $5M to help fund certain costs of an EAP such as upgrading manufacturing to clinical-grade, production quantity necessary for fulfilling EAP demand, etc. These are all issues which can currently prevent a pharmaceutical company (especially the small start-ups likely to take a chance on ALS) from accommodating a large EAP. We believe the financial issues can be solved and that the drugs being talked about with excitement in the ALS community can be brought to those who don't qualify for trials now, while they are still living.

Wide Open

Tonight I found a double-helping of tasty news: "Regulatory T-lymphocytes mediate amyotrophic lateral sclerosis progression and survival" (PDF). So what's the big deal? Let me explain in two parts - the scientific then the soapbox.

Open Book - Pt. 2

(sorry for the long delay between parts but I was engaged in other projects, and I had to find the top of my head)

As I said in Part 1, Elsevier, a multibillion-dollar scientific publishing company, is trying to present itself as a friend of Open Access.

Is this a joke?

Open Book - Pt. 1

Earlier this year I wrote about publishers who want to hide public research information behind paywalls. Well I walk my talk. On October 20th, I personally delivered a speech to the Open Science Summit 2012. You can see my full presentation here (at 47:40.00). You can also view the video portion of my presentation on Youtube.

I have a little more to say about open publishing coming up in my next post as soon as I find where the top of my head landed...
(those who follow my tweets might already know what's coming)