Stop the Pop

Apoptosis is an important function in multicellular organisms such as people. It keeps cancer at bay and helps keep organs healthy and fresh. But when it occurs in cells that aren't replaced (like motor neurons) nasty things (like ALS) happen. A couple of clinical trials are currently ongoing to support the mitochondria to delay apoptosis (Knopp with dexpramipexole and Trophos with olesoxime). Recently, a study was published which took a rather more aggressive approach. The approach probably isn't appropriate as a therapeutic because it isn't cell-specific. For a good explanation, please read Amber Dance's article over on the ALZ Forum. Ms. Dance is one of my favorite science writers and actually has some credentials to back up her analysis.

Stem Cell Update

Today (10/12/2010), Geron began a Phase-I clinical trial using embryonic stem cells to treat spinal cord injury. While not directly applicable to ALS, a successful safety trial should open up approvals for similar subsequent trials utilizing human embryonic stem cells. Already there is favorable preliminary information coming from the Neuralstem trial (which uses fetal neural precursors, not embryonic stem cells) and several more are in the approval pipeline. Meanwhile, in Israel, Brainstorm received approval to begin its trial for ALS. As discussed previously, Brainstorm engineers autologous cells to secrete neural growth factors and then implants them in muscle to promote axonal growth and nourish the cell body via axonal uptake. It's a novel approach which doesn't require risky surgery. These are just a few very interesting things going on in research and clinical trials. But keep in mind that they are happening now.

National ALS Registry

The United States National ALS Registry opened this month. There is an introductory page on the ALSA website, and a recorded webinar outlining the Registry can be replayed by clicking here. I believe it is the duty of each PALS to register so that finally accurate numbers can be known of the toll of ALS in the US. The oft-quoted "30,000" is a very rough estimate and in all likelihood much too few. This is an important tool too long missing from researchers' kits. I registered yesterday. How about you?

Laser Focus

For many years now, part of the fight against ALS has been focused on finding reliable biomarkers. This has proven difficult as there is so much variability in progression and phenotype. However, what if you had something better than a biomarker? How about direct observation of the motor neurons and the neuromuscular junctions. This is a sales video of the type of device used (a confocal microendoscope). And here is a news video with the device being used in diagnosis of another condition.The ability to live-image, in-vivo, down to the individual cellular level is super cool and is nearly "Star Trek" in terms of nifty. Professor Richard Ribchester is the person leading the work. This tool may be enormously helpful in studying neurodegeneration and in gauging efficacy of any experimental drugs or treatments.

Social Media

In the past few months a group of ALS patients (PALS) and caregivers (CALS) have banded together via social media to support each other, spread awareness, educate themselves, and effect real change in their lives. This is more than blog posts and Facebook status updates but rather a concerted and united effort to fill some of the void in the research and treatment of their disease. Using email and messaging, individual projects have combined as a force-multiplier and are already beginning to see results. The ease of using and linking various social media technologies have allowed the infirm to reach out to and engage a global audience in a way and with an impact never before possible. They can do this because they are young, angry, and embrace technology to support and replace lost physical abilities. This movement represents a potential paradigm shift in the way ALS is perceived and dealt with. The list of projects includes (but is certainly not limited to) my project to draft Hugh Laurie to be an ALS spokesman, Thomas Ohlson's Petition to ALSA National, the remarkable and unprecedented ongoing serial documentary following Timothy Lafollette from diagnosis to current time, and the recent various and coordinated efforts to rescue a quadriplegic PALS from an abusive nursing home situation (in which this blog also participated). There are many other projects with various strategies, but all with the goal of increasing awareness, research funding, and support efforts. Where in the past these efforts would be singular, isolated, and have very limited impact, with the use of social media (Facebook, Twitter, blogs, online forums, email and messaging/chat systems) they are now being coordinated and their message distributed all over North America. As the number and scope of projects increase, there can only be a positive effect. If you have or know of a project to increase ALS awareness, please hook up with us via social media!

Wordsmith

Since I am on a vent (tube stuck through neck into trachea, below vocal cords) and can no longer talk, I must throw my voice to another object. I therefore create a new word describing this amazing feat: "Venterloquism" This makes me and other similarly entubed PALS (along with our brothers and sisters in high cervical injury) Venterloquists. This is not to be confused with Ventriloquism which involves the creepy practice of people with Dissociative Identity Disorder manually sodomizing puppets for the purpose of entertainment. Venterloquism involves any of several methods of overcoming a cruel obstacle to communication. Methods include the rudimentary Eyebrow Arch (induce your meatpuppet to say "yes" or "no"), The Ouiji (make your proxy point out letters and phrases on a board), and my personal favorite, The Hawking (making your words emanate from a nearby computer). Advanced and prepared Venterloquists can even use The Hawking to produce their actual voice for certain phrases! Venterloquism is a growing skill set among a diverse population of participants. Please support your local Venterloquist!

911

I need everyone reading these words to take a few minutes to read these words. This has nothing to do with politics. This is a genuine emergency call for another PALS in desperate need. If anyone is in the area I implore you to consider some volunteer work. Contact me for details if you are able to volunteer. This is shocking and wrong and should be criminal.