‘Before the Ashes Fall’: the story behind the book and the movie in development about dementia

Editor’s Note: The author of the post below, David Serafine, is a corporate security professional in the US. He is not like most of our Readers, a professional in healthcare technology or social care. What compelled him to write a novel about a father and son, and a family affected by the onset of Alzheimer’s Disease, is his own family’s story. We deal with dementia as professionals, but it has also touched and affected our family lives, and in many cases, our work lives. 

David reached out to me through a post on LinkedIn and after some discussion, I have decided to share his message with you. He and his production team are now reaching out to people like us to find financing for a film treatment, to be shot in Western New York State. Through the film, they will tell not only a story, but also to use the film to promote education and societal awareness, especially among minority and underserved communities heavily impacted by this disease.

Through our networks and our companies, you may know a funder, or funders, who are interested in backing this cause. More information on the production is attached (Release–PDF). You may contact David at serafinedavid@gmail.com, phone 512.571.0418, or via LinkedIn .


Before the Ashes Fall by David Serafine

I first encountered Dementia in June 2016.  It was my wife’s grandfather, a sturdy and tough as nails Texas farmer, who was diagnosed with Alzheimer’s.   The man’s diagnosis came only a  year removed from tending crops beneath the relentless noon sun while seamlessly conversing with a razor-sharp precision. “And we need to hide his truck keys for good”. The words, stinging with an exactness and finality, didn’t quite measure up.  The man still looked normal.

One year later, I observed half of the same man blankly staring at a birthday cake, not realizing it was his. The celebration carried on around him, with each attendee recalling stories of his life. I stared hard at his face, almost willing a quiver or smile, anything to suggest the words resonated. Nothing moved. Finally, I noticed his jutting collarbones which resembled a cheap wooden hanger. My eyes traced the sharp rise and fall around his shoulders and the blanched fabric which hung from them.

I contemplated whether Alzheimer’s solely left this wake of damage. Or, was it exacerbated by his daughter’s own Frontotemporal Dementia diagnosis, relegating her final days to a Memory Care Facility?  I never knew the answer as two months later, the man succumbed to Alzheimer’s complications.  To this day, his daughter was never told that he died.   That type of message, with a woman in her condition,  could be a potential catalyst for further emotional distress. 

Sometime during that journey, I wrote a fictional novel called ‘Before the Ashes Fall’.   In short, the novel is a race for “Love, Forgiveness, and Redemption” between a father and son beneath the cloud of Alzheimer’s. The process was as equally heartbreaking as cathartic. I mostly bled and cried into pages for a year, completed it, and put it to bed.

However, the book elicited correspondence from Malaysia, Ireland, Brazil, and Chile. The messages always began the same: “I had a (insert family member) die from various forms of Dementia.  Thank you for writing this story”. Two observations became clear over time. First, ‘Dementia’ didn’t stay in lanes, either geographically or demographically.  It was global and touched everyone either directly or indirectly.

Secondly, and arguably the crueler facet, is the insidious nature of Dementia.  In many circumstances, the readers’ initially described  Dementia as a ‘normal’ part of aging.  It wasn’t until an unequivocal tipping point- “my husband left the stovetop gas on’’-that it was no longer ‘normal’. That same moment generated guilt within the de facto caretaker (spouse, daughter, etc.) of what could have been prevented.

I researched the diseases of Dementia -Alzheimer’s is but one diagnosis and it alone will cost over $1 trillion (globally) in 2020 alone.  I also learned life choices and even traumatic events had a dramatic impact on the diseases’ progression.  Those two points are the most critical: we have some control and hope with increased awareness.

In July of 2020,  my book was adapted for film by a multiple award-winning Director. The story and approach are unique, unlike the other Dementia-based films. As we will target 60 global film festivals, three primary goals materialized.

First, and the most unique aspect of the approach, is our desire to facilitate pragmatic and current medical forums.  The engagements will include not only allopathic guidance but more importantly, non-allopathic guidance.  We seek to educate communities on life choices – diet, exercise, early testing before the disease has advanced. There are informed choices we can make that can delay and lessen the impact of Dementia. This is least understood globally.

Secondly, we will use film and outreach to galvanize communities.  A search of Dementia-themed films will yield 2  most recognizable (Still Alice and The Notebook).  Our film will feature a different demographic, one illustrating the ‘absence of lanes’ with the disease.  This will be represented in the cast, crew, and artwork produced by local Dementia patients.

These goals have been welcomed by medical practitioners, podcasters, and Corporate Social Responsibility Executives.  In addition to a strong storyline, we believe film fans will sense a collective ownership of this film during its production and engagement in their communities.   Additionally, it’s supportive and empowering to overcome tragedy alongside others, particularly those who strive for a better future.

Finally, and unique to the film industry, we seek to re-invest 50% of all profits into Dementia-related awareness campaigns.  If funded, we believe “Before the Ashes Fall” has a 3X delivery back into the programs we seek to support.

“Before the Ashes Fall” is a fiscally sponsored film through the Film Collaborative and individual or corporate donations are tax-deductible.   It’s an amazing opportunity to shape the future for current and generations to come, all desiring the same goal: a cure for Alzheimer’s. 

[More information on the production here: PDF]

Advances in 2017 which may set the digital health stage for 2018

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2017/12/Lasso.jpg” thumb_width=”100″ /]Our second Roundup takes us to the Lone Prairie, where we spot some promising young Health Tech Advances that may grow up to be Something Big in 2018 and beyond. 

From Lancaster University, just published in Brain Research (academic/professional access) is their study of an experimental ‘triple agonist’ drug developed for type 2 diabetes that shows promise in reversing the memory loss of Alzheimer’s disease. The treatment in APP/PS1 mice with human mutated genes used a combination of GLP-1, GIP, and Glucagon that “enhanced levels of a brain growth factor which protects nerve cell functioning, reduced the amount of amyloid plaques in the brain linked with Alzheimer’s, reduced both chronic inflammation and oxidative stress, and slowed down the rate of nerve cell loss.” This treatment explores a known link between type 2 diabetes as a risk factor and the implications of both impaired insulin, linked to cerebral degenerative processes in type 2 diabetes and Alzheimer’s disease, and insulin desensitization. Other type 2 diabetes drugs such as liraglutide have shown promising results versus the long trail of failed ‘amyloid busters‘. For an estimated 5.5 million in the US and 850,000 in the UK with Alzheimer’s and other dementias, and for those whose lives have been touched by it, this research is the first sign of hope in a long time. AAAS EurekAlertLancaster University release, video

At University College London (UCL), a drug treatment for Huntington’s Disease in its first human trial has for the first time safely lowered levels of toxic huntingtin protein in the brain. The group of 46 patients drawn from the UK, Canada, and Germany were given IONIS (the pharmaceutical company)-HTTRx or placebo, injected into spinal fluid in ascending doses to enable it to reach the brain starting in 2015 after over a decade in pre-development. The research comes from a partnership between UCL and University College London Hospitals NHS Foundation Trust. UCL News releaseUCL Huntington’s Research page, BBC News

Meanwhile, The National Institutes of Health (NIH)’s All of Us programpart of the Federal Precision Medicine Initiative (PMI), seeks to track a million+ Americans through their medical history, behavior, exercise, blood, and urine samples. It’s all voluntary, of course, the recruitment’s barely begun for a medical research resource that may dwarf anything else in the world. This is the NIH program that lured Eric Dishman from Intel. And of course, it’s controversial–that gigantic quantities of biometric data, genomic and otherwise, on non-genetic related diseases, will simply have diminishing returns and divert money/attention from diseases with clear genomic causes–such as Huntington’s. Oregon Public Broadcasting.

Let’s not forget Google DeepMind Health’s Streams app in test at the Royal Free NHS Foundation Trust Hospital in north London, where alerts on patients at risk of developing acute kidney infection (AKI) are pushed to clinicians’ mobile phones, (more…)

CTE found in 99% of former, deceased NFL players’ brains: JAMA study (updated)

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2017/07/h_research_Figure-4.-Annotated-Normal.-Mild-CTE.-Severe-CTE.jpg” thumb_width=”200″ /]Updated for additional information and analysis at conclusion. In the largest-ever case study published of CTE–chronic traumatic encephalopathyVA Boston Healthcare System (VABHS) and the Boston University School of Medicine’s CTE Center found mild to severe CTE pathology in nearly all of the brains of former football players studied. Jesse Mez, MD, BU Medical assistant professor of neurology and lead author on the JAMA study, said that “The data suggest that there is very likely a relationship between exposure to football and risk of developing [CTE].” The CTE is marked by defective tau (stained red in the brain sample pictures, click to expand), which is also evident in Parkinson’s and Alzheimer’s Disease.

Of the 202 brains donated to the VA-BU-CLF (Concussion Legacy Foundation) Brain Bank:

  • The most dramatic finding is the detection of CTE in 110 of 111 donated former NFL players’ brains (defined as having played one play in a regular NFL season game).
  • In addition, the brains of other football players were studied. CTE was detected in seven of eight Canadian Football League former players (88 percent), nine of 14 semi-professional players (64 percent), 48 of 53 college players (91 percent), and three of 14 high school players (21 percent).
  • The severity increased with length of play, with the majority of former college, semi-professional and professional players having severe pathology. The deceased high school players diagnosed with CTE had mild pathology findings. Age at death ranged from 23 to 89.
  • Player position mattered. Linemen, running backs, defensive backs, and linebackers, who take most of the punishment in football, were the bulk of the donated brains with CTE.

Separately, and with no knowledge of the pathology, backgrounds on each donor were compiled to gather medical history and symptoms. What was striking were the personality changes evident with even mild CTE. Dr. Mez: “We found cognitive, mood and behavioral symptoms were very common, even among players with mild CTE tau pathology. This suggests that tau pathology is only the tip of the iceberg and that other pathologies, such as neuroinflammation and axonal damage, contribute to the clinical symptoms.” 

Preliminary to the current study was UNITE (more…)

DNA ‘Snapshot’ facial modeling–and predicting future Alzheimer’s risk

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2017/05/SNPSHT-Example-1-1024×972.jpg” thumb_width=”150″ /]It sounds like something from an episode of ‘Law & Order’ (US or UK), but extracting facial appearance and ancestry from a forensic DNA sample isn’t fiction anymore. Parabon NanoLabs was funded by the Defense Threat Reduction Agency (DTRA) to develop Snapshot originally to dismantle improvised explosive device networks in Iraq and Afghanistan. The methodology was then transferred to DNA analysis. Parabon uses data mining and advanced machine learning to predict how the single nucleotide polymorphisms of the genome will make someone appear. This appearance profiling includes eye color, skin color, hair color, face morphology, and detailed biogeographic ancestry (see left above). The forensic art alone can age up or down the subject, adding or subtracting glasses and facial hair. These factors have successfully focused investigations for over 80 law enforcement agencies. According to Armed with Science, Parabon is now transferring the technology to predict an individual’s lifetime risk of Alzheimer’s–certainly a revolutionary use in healthcare technology.

Concussion diagnostics a hot area

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2014/05/Cerora-Simon.jpg” thumb_width=”150″ /]Diagnosing concussive and sub-concussive head blows both in sports and on the battlefield have been challenging, and your Editors have chronicled several approaches. One of the 2014 graduates of NYCEDC’s ELabNYC was Oculogica; their EyeBox CNS records three key eye movements in a 4 1/2 minute test to determine whether they fit a normal box pattern, with subsequent exams determining rate of brain recovery [TTA 17 Apr]. (We’ll be seeing more of Oculogica at NYC MedTech 13 May, along with MC10 which helped to develop the Checklight impact indicating skullcap with Reebok, seen at last November’s CES preview [TTA 15 Nov 13] and winning CES’ 2014 Design & Engineering award.) Now out of Bethlehem, Pennsylvania is Cerora’s MindReader, developed out of Lehigh University, Ben Franklin Technology Partners of NE Pennsylvania and in the first StartUp Health Academy/GE Entrepreneurship class. It is a wireless dry contact EEG reader which combined with other biosensor data and clinical observation aids speedy diagnosis. The reader is worn either on Google Glass or a headset (pictured above left on CEO Adam J. Simon, PhD). It’s in early days and still in testing; the baselines alone will need data from at minimum tens of thousands of subjects beyond the current testing on Lehigh U. athletes. Dr. Simon is also projecting use for sub-concussion injury, Alzheimer’s, PTSD and other neuropsychiatric disorders. Lehigh Valley Live, release on presentation at the American Academy of Neurology Annual meeting 30 April, WFMZ Ch. 69 News (video)

Another diagnostic for Alzheimers with impact on telehealth gains $2MM funding

Will a market of hundreds of millions be able to access these needed technologies?

Neurotrack, a computer-based cognitive program designed to pick up changes three to six years in advance of an official diagnosis of Alzheimer’s or dementia, gained Series A funding led by Founders’ Fund (Peter Thiel) and joined by Social+Capital Partnership plus several angel investors. Developed initially at Emory University with the technology part of a five year National Institutes of Health (NIH) study, it tests subjects on preference for repeat images versus novel images; a preference for repeat images may indicate a disturbance in the hippocampus area of the brain in completely asymptomatic subjects. However, you will not find it at a doctor’s office or a pharmacy kiosk near you soon. Its initial use will be in clinical trials for pharma companies developing drugs targeting early-stage dementias. The meaning for telehealth and telecare (more…)

Helping the ‘beleaguered caregiver’

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2013/04/60344-1-lg.jpg” thumb_width=”150″ /]Medication organizing/sharing apps, geotracking, learning programs and texting are helping caregivers of those with Alzheimer’s, heart conditions and autism better cope with family conditions.   The National Alzheimer Center, a division of Hebrew Home at Riverdale in Bronx, NY, developed the Balance $3.99 app that has multiple features: Pill Box (med management), Learning (sharing info about the disease), Caregiving, Schedule (sharing calendars), Doctor Diary (tracking physical and emotional changes in the patient and sharing them with the doctor/s) and News (Arutz Sheva/Israel National News; release with photos). Available currently on iTunes; Android version to come. The Alzheimer’s Association offers Comfort Zone, which uses GPS to track the person with Alzheimer’s within a pre-set geographic area, for about $43 a month. For heart patients, Mended Hearts will be starting a program of texted tips for caregivers. Autism Speaks has collected learning websites and apps for tablets which families have used successfully with autistic children, and has given away over 800 to low-income families.  None are pricey, all serve growing populations–and none will generate buzz at industry cocktail parties. Beleaguered caregivers getting help from apps (SacBee/AP)

Losing ground: Alzheimer’s as a leading cause of death

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2013/03/Alz-bar-graph.png” thumb_width=”200″ /]This short bar chart (Change in Number of Deaths between 2000 and 2010) tells a story that your Editor did not realize. Alzheimer’s disease currently is the 6th leading cause of death in the United States overall–and where the opposite of progress has been made. Part of this could be better diagnosis, but in large part it is the aging population.

For those innovating health tech, there’s a big job to be done here: not a cure, but to support those with Alzheimer’s and vascular dementias in everyday quality of life (brain fitness, mental stimulation, activities of daily living/ADLs); to aid their caregivers in caring for them, as well as their own quality of life; and geriatric professionals in lengthening time at home and creating stimulating communities, not ‘memory care floors’. Not perhaps as fun as a fitness app, but potentially more rewarding and disruptive to the current distressing model. Graph courtesy of the Alzheimer’s Association (US)