Author Archives: Brian Anderson

ALS Biomarker Panel at the Society for Brain Mapping and Therapeutics Conference

15–17 March 2019

SBMT 16th Annual Congress

Los Angeles Convention Center in LA

FLYER

The 16th Annual World Congress of SBMT brought together physicians, scientists, policy makers, funding agencies and industry to further the advances and applications in brain and spinal cord mapping and image guided therapies (operative and non-operative). The conference took place at the Los Angeles Convention Center.

The goal of the conference was to create a critical mass by introducing synergy amongst inter-disciplinary researchers to further understand the brain function and nervous system. It also served as a platform from which to develop interactions between many of the stakeholders who had extensive collaborations at national and international levels.

The conference provided the opportunity to be at the forefront of brain sciences, therapeutics in general and neural stem cells interventions in particular. It served as a strong platform for industry and biotech companies to interact with academia in frontiers of science in this field for translational initiatives involving diverse patient’s interest groups.

http://www.worldbrainmapping.org/Annual-Congress/

16th Annual Congress of Society for Brain Mapping promotional video – 2019 from Brain Mapping Foundation on Vimeo.


Topics & Speakers

Moderator: Mike Piscotty, ALS Cure

Biomarkers to aid diagnosis and monitor drug efficacy in clinical trials for ALS
Robert Bowser, Ph.D. The Barrow Neurological Institute

Biomarkers for CNS injury and disease
Kendall Van Keuren-Jensen , Ph.D. TGen

A data-driven approach links microglia to pathology and prognosis in ALS
Johnathan Cooper-Knock Ph.D. University of Sheffield, UK

Allosteric assembly machine modulators for ALS therapeutics
Vishwanath R Lingappa, M.D., Ph.D. Prosetta Sciences

Financing ALS biomarker discovery
Natalie Fernandez, 2019 MBA Candidate, The Martha Olson-Fernandez Foundation

The interdisciplinary nature of the SBMT conference allowed the ALS biomarker panel members to learn and collaborate with fellow industry members. The biomarker research topics were promising. Stay tuned for research article postings on the studies discussed.

Director Bobak Kalhor interviewed each of the panelist for an ALS media project. Bobak is director of “A Dying King- The Shah of Iran.” He recently lost his mother to ALS.

5th Annual MOFF Hike x Brunch and 1st Annual ALS Panel Discussion

Thank you to all of the 5th Annual MOFF Hike x Brunch participants!

 

Thank you to everyone who came out to hike Felsman Loop in San Luis Obispo on Saturday, February 23rd. We all placed roses on Martha’s memorial bench and enjoyed a gorgeous view in great company. At the top of the hike, we read a poem that depicted ALS patients’ incredibly difficult journey with the disease. The poem was followed by quotes that embody the resilience of ALS patients. Martha was a beautiful example of that strength and bravery in action.

The ALS panel discussion during the brunch portion of the event was very well received. The panel answered the following questions:

       What causes ALS?

       Is there a high incidence of ALS on the Central Coast?

       What happened to the $115M raised during the Ice Bucket Challenge?

       What treatments are currently available to patients?

       Where are your MOFF donations going in 2019?

        Research Highlights: ASOs & STMN2 target for sporadic ALS

 

Our panelists were Natalie Fernandez from MOFF, Cherryl Goldstein, Stacy Inman and Janelle Webb from the ALS Association. Thank you very much to the ALS Association Golden West Chapter for participating in our first annual ALS Panel Discussion! We had a great time taking questions from donors regarding if ALS is one disease and also what future CRISPR technology has in the ALS research world.  In order to align with the interdisciplinary approach to fighting ALS, we look forward to inviting an array of panelists to future hike x brunch events.

 

If you have any follow-up questions, please email the MOF Foundation at giving@moffoundation.com.

 

Would you like to make a donation to the MOFF Organization?

Click on the donate button below. No amount is too small or too big! Please note that a 2.3% PayPal processing fee will be added to all credit card transactions.

 

Join the fight with us!

Please make checks available to The Martha Olson-Fernandez Foundation or MOFF and mail to the Broad Street address below.

The Martha Olson-Fernandez Foundation is a tax-exempt, 501 (c)(3) organization. Tax ID: 45-4983912

2019 California ALS Research Summit

Day 1

1. Whole genome sequencing (WGS) analysis projects are being undertaken by the following collaborative bodies: Track ALS, NeuroLincs, CABB, ALS Natural History, Answer ALS, NYGC ALS Consortium, and Target ALS. The data will be available to the public via the database ALSoD in early 2019.

2. There are several active stem cell trials being conducted in the U.S. by Braincell Therapeutics and also Avexis Pharma

3. Dr. Steve Finkbeiner from UCSF discussed machine learning in the context of ALS research. More specifically, he discussed how efficient and accurate the technology will be when it comes to exploring therapeutic targets and genetic patterns in neurodegenerative diseases.

4. There is currently a lot of research being done on the role of microglia, astrocytes, and macrophages in ALS. These research efforts attempt to understand the underlying pathology of the disease.

5. TDP43 was discovered to be present in all ALS models. It is now being looked at as a target that can be corrected with gene alteration.

Most of the top researchers in the ALS research world on the west coast were represented at the conference. The list below contains 5 ALS research pioneers. If you are interested in their research, each of them has many publications under their names.

* Leslie Thompson, PhD, UC Irvine
* Steve Finkbeiner, MD, PhD, UCSF
* Aaron Gitler MD, PhD, Stanford University
* Clive Svendsen MD, PhD, Cedars-Sinai Medical Center
* Dr. Richard Smith (CNS)

Day 2

1. The Lazarus Project was presented by Dr. Ranjan Gupta, MD from University of California Irvine. His research debunked the theory that motor function cannot be recovered after 6 months of de-innervation. His surgical procedures are truly miraculous. In some cases, he was able to execute nerve transfer surgeries to bring function back to limbs that had not been utilized for 6 years. Learn more about his research here.

2. Dr. Steve Finkbeiner’s lab revealed results from his high throughput microscopy project which targeted autophagy in ALS cells. Read more about his research here.

3. Mitsubishi Tanabe Pharma America, the company that makes Radicava, was represented by Dr. Stephen Apple, the senior medical director at the company. Dr. Apple discussed post market surveillance and their Phase 4 trial that they laid the foundations for. The Phase 4 trial plans to utilize biomarkers to detect the efficacy of the drug within ALS patients. Results from the study should be release in 2021.

4. New ALS targets were identified by Dr. Aileen Anderson from University of California Irvine. She studies spinal cord injuries and encouraged researchers to look into the autocrine signaling pathways in neuronal cells. More specifically, Dr. Anderson’s research explored neuronal stem cells to see if they had specific receptors that could be blocked. Her research found 5 novel receptors in neuronal stem cells that could be potential targets.

5. Routes of ALS drug administration were discussed in the context of antisense oligonucleotide therapies (ASOs) in order to answer the questions: How much virus is necessary, and where do you need to inject it in order to adequately cover the CNS? A new method of subpial drug administration (injection of the drug under the pia mater in the CNS) is being explored. Previously, intrathecal administration was the standard for ASO drug administration such as AVXS-10.

At the end of the day Ask the Experts took place in a separate building. At this panel, ALS patients and their families were able to discuss the most current scientific findings with the researchers themselves. Even though much progress has been made, the disconnect between the research world and the ALS patients was still noticeable.

The 6th Annual MOFF Golf Tournament

The 6th Annual Martha Olson-Fernandez Foundation raised an impressive $121,000!!!

Cypress Ridge Golf Course claims it was their highest earning golf tournament yet! Thank you to all our sponsors, golfers, and volunteers that made this fundraising amount possible. Not only did we have a record amount of sponsors, but the tournament was completely full! The community support was truly incredible.

 


The winners of the tournament were:

1st Place: Anthony Aurignac, Nico Aurignac, Thomas Orradre, Mitchell Martin

2nd Place: Manny Silva, Paul D’Ambra, Brandon Hill, Oliver Petri

3rd Place: Joe Garcia, Terry Garcia, Mike Monroe, Eddie Garcia

Hacker’s Prize Winners: Bridget and Paul Ready, Jim and Margaret Neville

Closest to the pin (women): Tess Boehm

Closest to the pin (men): Ricky Sartain

Longest drive (women): Terri Garcia

Longest drive (men): Mark Foos

Fiesta Dinner Winner: Ed Attala! We cannot wait to celebrate with you, Ed! 🙂

Congratulations everyone!


A special thanks goes out to our top sponsors:

Dave and Roberta (Rob) Fernandez, The Chao Family, Murray Street LLC



Shout out to our first ever Heckle Hole Hecklers! You guys were obnoxious and distracting. It was glorious.


ALS Pepper Challenge

MOFF takes on the Hot Pepper Challenge

In 2018 the ALS Hot Pepper Challenge went viral. At MOFF we were very excited to participate in the Hot Pepper Challenge during our 4th Annual Hike x Brunch event. We ate jalapeños, seranos, and even habañeros in order to raise ALS awareness in our community. Thank you very much to the Voloagri Group Inc. for providing the peppers. They were HOT.

The Martha Olson-Fernandez Foundation donates to ALS Therapy Development Institute and The ALS Association Golden West Chapter annually. We are a 501 (c)(3) certified non profit foundation. Tax ID # 45-4983912

ALS Leadership Summit Boston 2015

On November 15 2015, Martha Olson-Fernandez Foundation officers, Larry and Natalie Fernandez, attended the ALS Leadership Summit in Boston. The summit, hosted by ALS Therapy Development Institute (TDI), offered a wealth of knowledge on recent advancements in ALS research projects. The summit and featured speakers from Biogen, ALS TDI, The Forbes Norris ALS/MDA Clinic in San Francisco, and the Harvard School of Public Health. The attendees included investment companies, top researchers in the NMD/ALS field, pharmaceutical company representatives, as well as ALS patients and their families. The energy in the conference room at the Hyatt was charged by powerful minds, and a frustrated search for answers to such a complex disease pathology. The element of time was what everyone felt short on.

The takeaway from the conference was that ALS is not an untreatable disease, but an underfunded one. Recent research has surfaced many new findings about the disease and the role of the immune system in the final stages of the disease, but due to the nuanced subjectivity and spectral nature of ALS, researchers are still racing time to find treatments.

Overall, the summit centered around several key topics:
1. The importance of utilizing biomarkers to track pathogenesis and drug efficacy in ALS patients.
2. The methodology behind initiating, and executing preclinical research projects at ALS TDI
3. The structure and function of the Precision Care Program at ALS TDI
4. The discovery of the role of the immune system in the later stages of ALS and how this immobilizing stage of ALS can potentially be slowed and prevented with AT-1501.
5. Biogen’s discussion of new ways to visualize how effective intrathecal drug delivery is at getting the drug molecules passed the blood brain barrier and into the Central Nervous System (CNS).

The ALS TDI Leadership Summit hosted an awards ceremony during which it recognized several courageous people dedicated to fighting ALS. The 2015 Leadership Award winners are listed below:
Award: Stephen Heywood Patients Today Award. Recipient: US Navy LT. Commander (RET.) Matt Bellina (Holland, PA)
Award: Stephen Milne Adventurous Spirit Award. Recipient: Sarah Coglianese (San Fransisco, CA)
Award: Mary Lou Krauseneck Courage & Love Award. Recipient: Bobby Forster (Newport, RI)
Award: Fran Delaney Challenge & Respect Award. Recipient: Beth Hebron (Maplewood, NJ)
Award: Stephen Mile Adventurous Spirit Award. Recipient: Maureen Ramirez and Team Godfather Charitable Foundation
Award: Stephen Heywood Patients Today Award. Recipient: Jay Smith (Austin, TX)

 

Thank you to ALS TDI for the informative and well executed leadership summit.