Tag Archives: ALS

12DaysOfGiving To SRG


Goodworld Logo

We are just 6 days from the end of Goodworld’s #12DaysofGiving. If we can get the most new donations by 12/31/2016, we will head into the new year with not just your taxi-deductible donations but an extra $5000, enabling SciOpen Research Group to do a whole lot of good. Please donate today!

Comment on this Facebook post with the hashtag “#donate” + any amount (Ex: #donate $100) and we will reply with a quick, one-time form for you to complete. If you aren’t reading this on Facebook – if not, please go to https://www.facebook.com/SciOpenResearchGroup/, Like us, and find this post.

Remember, we have no salaries or overhead like building rental to pay, so 99% of donations go directly to research into a treatment for ALS.

Another way to donate is to go to http://www.sciopen.org/wp/donate/ and using our Paypal link. Or you can donate for FREE year-round by doing your online shopping at Amazon Smile and selecting SciOpen Research Group as your charity of choice or just go to https://smile.amazon.com/ch/46-2581137. Every time you make a purchase this way, Amazon Smile donates 0.5% (one-half of one percent) of the purchase price to SciOpen Research Group, all at no cost to you!

SciOpen is run by and for PALS, so we are your research organization. Tax deductions are only available to residents of the USA (but international donors are greatly appreciated).

We Are Even Better Than Harvard


News is going around that Harvard researchers have identified “the spark plug that ignites ALS.” This is really interesting news, but we at SciOpen Research Group are already going beyond this. We are right now doing a proof of concept study which aims to stop the process investigated by the Harvard team.

Stop it dead in its tracks.

That means if we (and Harvard) are right, we can end ALS as soon as a person is diagnosed. Admittedly, that’s a big if. But it’s a real possibility. And we can only carry on with YOUR help. We are small but we are nimble and we are aggressive. Join us by making a tax-deductible donation and/or shopping online at smile.amazon.com and naming SciOpen Research Group as your charity.

We at SRG thank all of you for your support!

Necroptosis News

Good News For Our Latest Project!

A recent report published in Science magazine strongly suggests that SciOpen Research Group is onto something with its currently ongoing study of necroptosis in ALS. Necroptosis is a “cousin” of apoptosis. In contrast to apoptosis, which happens regularly in the body, necroptosis is a form of programmed cell death which happens under inflammatory conditions and in which the components of the dead cell spill into the extracellular space. The spilling of the cellular components trigger a response in which immune cells are recruited to the area. Necroptosis is known to be a driver of both genetic ALS and sporadic ALS.

The subject study is not a direct support, in that it was looking at how the optineurin protein contributes to ALS. However, the results showed significant increase of the MLKL protein in human patients and that elimination of the RIPK3 protein or inhibition of RIPK1 had modest but nevertheless positive effects on survival of the SOD1 mice (along with positive biological evidence). This suggests that SRG is on the right track with its MLKL study. We believe that acting on MLKL will have a stronger effect without disrupting other cellular functions which depend on RIPK3 and/or RIPK31 (MLKL is involved only in necroptosis).

This study is YOUR study. It would not be position without your support. SciOpen Research Group is the world’s first fully functional “guerilla biotech”. We function only with your support and study pathways other research organizations either miss or ignore. And we can do it for much less because we are purely volunteer and have no overhead. 100% of your donations go directly to research. To support us you can make a tax-deductible donation (USA residents only) by going to our Donations page, purchase some SRG Gear, and/or go shopping on Amazon Smile and name SciOpen Research Group as your charity of choice (we are a registered and approved nonprofit under IRS 501c3). We work on ALS for you, the ALS Community, because we are part of the ALS Community. Help us continue our novel research into eradicating ALS.

Finding A Clinical Trial

What’s better (and more difficult) than finding a Vaporeon in Pokemon Go?

Finding a clinical trial for ALS within reasonable distance!

Our friends at TrialReach have a new widget which does all the searching work for you! Simply plug in a few bits of information such as condition (ie Amyotrophic Lateral Sclerosis}, age, gender, and ZIP code, and you will be presented with the trials within the distance you specify. You can click each to find out more details, and/or you can further refine your search criteria.

For the benefit of the entire global ALS Community, we have installed the widget on this website. Please check it out!

For many conditions, especially ALS, a clinical trial represents the only shot at survival. Patients should quickly enroll so clinical trials can be completed as swiftly as possible and the treatment can be advanced to market or science can move on to the next candidate.

As all PALS know, time is our most precious commodity. Check out the new page, plug your information into the widget, and (if you qualify) enroll in a clinical trial today! Not only could it save your life, your timely action could save the lives of countless others.

Necroptosis Now!


Contact: Eric N. Valor (ericv@sciopen.org)

SciOpen Research Group Announces Collaboration
With The Florey Institute of Neuroscience and Mental Health
and The Walter and Eliza Hall Institute of Medical Research

Santa Cruz, California, June 1, 2016 – SciOpen Research Group, Inc., a nonprofit research organization investigating possible treatments for Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease), has announced a research collaboration with the Florey Institute of Neuroscience and Mental Health at The University of Melbourne, and the Walter and Eliza Hall of Medical Research, Australia. The program will run through the latter half of 2016.

“We are excited to begin this collaboration with the Florey Institute and Walter & Eliza Hall Institute aimed at testing proof of concept for a novel therapeutic pathway in ALS,” said Eric Valor, President of SciOpen Research Group. “Dr. Bradley Turner has extensive experience with the classic ALS mouse model and is actually generating a new version of the model which will represent a theoretical 100% efficacy. Dr. James Murphy brings pathway expertise and tools, and a library of molecules targeting the pathway developed by colleagues at the Walter and Eliza Hall Institute and Catalyst Therapeutics Pty Ltd.

The pathway being investigated involves a recently identified form of programmed inflammatory cell death called “necroptosis” which is regulated by a protein named MLKL. Since MLKL has no other known role in the body it represents an interesting target with a lower risk for potential side effects.

“We believe that inhibition of this pathway is a promising therapeutic target in ALS,” said Dr. Turner. Dr. Murphy is already working on MLKL inhibition in other conditions, including the ischemia-reperfusion injuries that occur in stroke and acute kidney injury. “Halting necroptosis could potentially stop ALS progression by breaking the feedback loop of neuroinflammation from astrocyte toxicity,” Dr. Murphy explained.

About SciOpen Research Group:

SRG, a California-based 501(c)3 public charity, is a team of Persons(s) with ALS (PALS), citizen scientists, doctors, and pharmaceutical industry professionals who are frustrated by the limitations of the current drug development process aimed at treating ALS. SRG seeks out interesting new molecules or repurposed drugs to test in various models of Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease).

SRG is a new type of biotech called a guerrilla biotech. It is young, small, aggressive, and is the new wave of how science will be done in the future. By outsourcing and utilizing Cloud-based infrastructure, it can do the same science as large institutions for a fraction of the cost.


About the Florey Institute of Neuroscience and Mental Health:

The Florey Institute of Neuroscience and Mental Health is the largest brain research group in the Southern Hemisphere. It works on a range of serious diseases including stroke, epilepsy, Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, Huntington’s disease, motor neuron disease, traumatic brain and spinal cord injury, depression, schizophrenia, mental illness and addiction.

Research of the brain and its diseases has gained considerable momentum internationally. Many scientific and technological advancements have been made, and much of the Institute’s work has been center stage. State and Federal Governments, major philanthropic foundations and many generous private benefactors have recognized the importance of neuroscience as the final frontier in medical research.


About the Walter and Eliza Hall Institute of Medical Research:

The Walter and Eliza Hall Institute is Australia’s oldest medical research institute. It was founded in 1915 with financial support from a trust established by Eliza Hall, following the death of her husband Walter. Three nationally and globally significant areas of health have been long-term, central interests of the institute’s research:

  • cancer – understanding the basic processes that are disrupted to generate cancer cells and how these can be targeted to treat disease;
  • immunology – discovering how the body fights infection, and how errors in the immune system lead to disease; and
  • infectious diseases – today with a focus on globally significant pathogens, especially malaria and chronic infections.

Institute scientists take a multidisciplinary approach to addressing major research questions, integrating expertise in bioinformatics, clinical translation, genomics, medicinal chemistry, personalized medicine, proteomics, structural biology and systems biology.


Mission: Petition

Recently there has been excitement in the global ALS Community surrounding a press release from a company called Genervon. Following that, a petition to the FDA was launched in support of Genervon’s intention to seek Accelerated Approval. While the data presented so far isn’t quite conclusive for immediate full approval, it is nonetheless intriguing.

Clearly the current status quo in research and development of ALS therapies is insufficient. That’s why SciOpen Research Group was founded. SRG supports the grassroots efforts of patients to change that paradigm. The Accelerated Approval Program requires data capture just like a regular trial except that it would be open to all PALS. Set up with a strict dosing and data collection protocol, this is a perfect compromise between patients wishing to try experimental drugs and the need for scientific information.

Therefore, SciOpen Research Group supports this petition and urges readers to sign and widely share it.