This is an exciting time for researchers in the ALS field
and I wanted to share with you some encouraging developments in our scientific
progress as we commemorate the 70th anniversary of Lou Gehrig's
farewell speech.
The ALS Association has
played an integral role in establishing an international consortium focused on
the identification of gene mutations linked to ALS. Significant advances in ALS research have resulted from the
discovery of the first gene mutations linked to ALS in an enzyme within cells
known as SOD1. With the identification of additional genes we hope to
understand more about how these mutations contribute to both familial and
sporadic ALS, which will enable the development of meaningful treatments to extend
the lives of those battling this disease.
I am excited to tell you that our understanding of ALS was
significantly accelerated in the last year with the groundbreaking discovery of
two new genes, TDP-43 and ALS6, both with similar structure and function. These
genes are involved in cell processing, complex methods in which messages are
translated for proper functioning of cells. Abnormalities in cell processing
have been implicated in other motor neuron diseases such as spinal muscular
atrophy (SMA), a childhood motor neuron disease, suggesting that there may be
common mechanisms involved in cell death in other neurodegenerative diseases.
These recent findings open up a whole new avenue of research, bringing new
players to the field to develop model systems and determine both the normal and
altered functions of these genes in ALS. As we learn more about these genes and
develop model systems with these gene mutations, we can begin to test potential
drugs.
Through The ALS Association's TREAT ALS® program, we
will fund vital drug development and clinical trial efforts and move potential treatments
from bench to bedside and into the hands of people battling ALS. It is our quest and our goal to find those
treatments that can slow or stop this disease, and to do so as quickly as
possible.
Posted by Lucie Bruijn, Ph.D., Senior Vice President of
Research and Development, The ALS Association
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Thank you for spreading the word. I will give this blog a shoutout on my next blog. Working together we can defeat ALS!
Julia
http://werbiefitz.mlblogs.com/
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Can we please do everything possible so that part of the AWARENESS we are creating is for the terrible lack of choices given to TODAY's patients. ALSA is to be commended for its leadership in fighting for future cures for future generations of ALS sufferers, but the fact is 90% of current ALS patients will not live to see the benefit of anything that's still in trial or not yet in trial phase.
Why is the ALSA silent on IPLEX? This drug is proven to be safe for use in humans, and the FDA acknowledges its possible effectiveness for use against ALS symptoms. Furthermore, Iplex has had *overwhelmingly* favorable results in the individuals with ALS who've been granted their rights to try it.
A civil rights violation is being perpetuated because FDA is overstepping its guidelines of judging risk and efficacy, and citing opaque economic issues in their vigorous opposition of our rights to try the drug.
Now this is something America needs to be aware of! Iplex is THE pivotal issue in enabling 35,000 Americans to fight for their lives. And this country is now the only one in the world denying its citizens the chance at using Iplex, in a time when there are zero effective alternatives in fighting ALS.
If you want to learn more, contact me through this site. If you want to help, please contact me or the FB Group: REAL ALS Awareness on July 4th!.
http://www.facebook.com/inbox/readmessage.php?t=1119494360488&f=1&e=-12#/group.php?gid=96329618866&ref=ts
We need the ALSA to be on the right side of this issue! Don't forget TODAY's patient and their right to fight for their lives!
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