What Happened in Guam? (Halloween Edition)

Classic Halloween stories have a spooky setting (like a haunted house or an abandoned log cabin), a deranged animal, and a full moon. While the story you are about to read doesn’t contain any of these elements, the reader may argue that it’s spookier, because it’s real.

Let us begin. The setting is in present day, Umatac, Guam. To most, Guam is a beautiful island in the South Pacific that is utilized by the U.S. military for its strategic positioning. If you talk to any scientist that studies neurodegenerative diseases, they would not site Guam’s natural beauty, but rather, they would allude to Guam’s dark medical history. One that has puzzled the scientific community for years. According to a 2017 article written in Penn Medicine Magazine, 1904 was the date the first official reports documented a peculiar disease that was plaguing the Umatac community. It is said that folklore reaching back two centuries documented cases of the same symptoms: “tremors, paralysis of the arms and legs, missed memories, and bouts of dementia” (Penn Medicine Mag 2017).

The Chamorro people are the locals of Guam. They called the disease lytico-boding, which alluded to the paralysis and listlessness that characterized the disease. The more formal scientific name is amyotrophic lateral sclerosis-parkinsonism-dementia or ALS/PDC. Lytico-boding was a very fast progressing disease that affected the islanders from age 15 to age 50. In 1954, it was the leading cause of death among the Chamorro people. A 1954 article in the Neurology Journal reported the incidence rate of lytico-boding to be “50-100 times that of the global average for ALS during this time.” That’s insane!

It is truly spooky. Luckily, the rate of disease has decreased significantly in the past decade, but that doesn’t erase what caused the disease in the first place.

Scientists have studied the disease for nearly a century and still have no definitely answers. That is certainly not due to a lack of hypotheses or funding. Parties involved in trying to solve the Chamorro people’s medical mystery have included the National Institute of Health (NIH), the Department of Defense (DOD), multiple academic institutions, and scientists from various disciplines. Notable researchers who have studied lytico-boding include:

John Q. Trojanowski, Dr. Gerard D. Schellenberg, Dr. Leonard T. Kurland, Majorie Whiting (anthropologist), Dr. Peter Spencer, Dr. Paul Cox, and Dr. Oliver Saacks.

Scientific hypotheses have all pointed to environmental factors such as the cycad seeds that the villagers consumed, military waste, poor eating habits, or interfamilial marriages. The Chamorro people have their own theories, such as the disease is the aftermath of a curse from an angry Catholic priest. A popular, more recent theory, developed by Dr. Paul Cox was featured in the February 2019 edition of Fortune Magazine. His research points to the high concentration of ß-N-methylamino-L-alanine (BMAA) that remained in the fat tissue of the bats that the Chamorro people ate as a delicacy. Dr. Cox affirms that a small molecule amino acid known as L-serine can combat the affects of BMAA. He is currently  involved with two Phase II trials of L-serine, one for ALS, and one for Alzheimer’s disease (AD). He believes L-serine will prevent neurofibulary tangle formation in AD and increase ALSFRS-R scores in ALS patients. The video below explains his research in Guam and in the U.S.A. further.

While lytico-boding has been useful for developing questions and theories of other neurodegenerative diseases, the mystery remains unsolved and downright SPOOKY. For more information on the medical mysteries of Guam, click here to read Steve Graff’s complete article.

HAPPY HALLOWEEN

If you are interested in more cases of neurodegenerative disease clusters. Check out the link below.

ALS Clusters in Japan 

Natalie Fernandez
Program Director, CFO
Natalie is the associate project manager of clinical development at Viracta Therapeutics in San Diego, CA. In her spare time, she works as the program director and CFO of MOFF. Well connected within the ALS community, Natalie runs the ALS Research Paper Review Initiative (ALS RPR) and is a member of the ALS Association National Chapter Patient and Caregiver Advisory Committee (PCAC). Natalie completed her MBA degree in Pharmaceutical and Healthcare Business at The University of the Sciences in Philadelphia in June 2019. She holds an undergraduate degree from NYU in Communicative Sciences and Disorders and Spanish.

Andrea Fernandez
Director, Secretary
Andrea is currently working for Plaid in San Francisco, California. She earned her B.S. at California Polytechnic State University at San Luis Obispo. Andrea chose to live abroad and teach in Spain for a year prior to moving to San Francisco. She is currently enjoying the NorCal city lifestyle and looking forward to all that is to come.

John Ronca
Board Member
John joined the MOFF board of directors in April 2020. Bio coming soon.

Cheri Humphrey
Board Member
Cheri Humphrey joined the MOFF board of directors in August of 2019. Cheri grew up in Dixon, CA and moved to San Luis Obispo to attend Cal Poly. It was there that she met her husband Jim. They now reside in SLO and have a daughter, Victoria and a son, Riley. Cheri is instrumental in the operations of the iconic Madonna Inn, which she has been the manager of since 1989. Cheri and her family have been ALS advocates since the inception of MOFF. We are honored to have Cheri as part of the board to guide community outreach and continue raising awareness of ALS prevalence on the Central Coast.

Ian Parkinson
Board Member
We are very excited to welcome San Luis Obispo County Sheriff, Ian Parkinson, into his second two-year term as a member of the Martha Olson-Fernandez Foundation Board. Ian has served as Sheriff since 2011 and is well known in the community for this tireless efforts to improve the law enforcement processes of SLO County. Ian knew Martha Olson-Fernandez and has been a supporter of MOFF since 2012. We are very grateful for his commitment to help us carry out our mission to fight ALS through patient care and research. We look forward to utilizing his strategic insights and community outreach to further the MOFF mission.

Larry Fernandez
Director, CEO
Larry is currently an executive for a private vegetable seed company. He has been an entrepreneur in the seed industry for 35 years. He is the proud father of Andrea and Natalie and enjoys watching them pursue their education and practical learning through their job experiences. When time allows, Larry enjoys hunting and fishing. His desire is to find a cure for ALS.