Bertrand Might: Life, legacy & next steps
December 9th 2007 - October 23rd 2020
Established initially as a memorial after Bertrand “Buddy” Might’s sudden passing on October 23rd 2020 at the age of 12, this page now serves to remember him as a person and also to coordinate and catalyze activities that honor his legacy, such as the newly formed Bertrand Might Endowment for Hope.
If you never knew Bertrand, there is a brief recap of his remarkable legislative, digital, communal, medical and scientific legacy and coverage of his life and final months by Casey Ross at STAT News.
As a step toward building his active legacy, as his father and in the spirit of the mission he gave me in life, I’ve begun publishing articles on this site related to precision medicine.
The very first is The Algorithm for Precision Medicine. It is an overview of the process and the science that Bertrand taught me in his brief life on the road to diagnosis and to treatments. It is my hope that it will now benefit others.
This page includes:
- an archive of the original announcement;
- causes in Bertrand’s honor, including the Bertrand Might Endowment for Hope;
- highlights of Bertrand’s life and legacy;
- where to leave comments for Bertrand’s family;
- video archive of his Celebration of Life; and
- answers to some common questions.
Causes in Bertrand’s honor
Many have asked about donating to a cause in Bertrand’s memory.
We felt it best to offer several options, so that any of Bertrand’s friends who wish to contribute to his legacy could find a facet of Bertrand’s life that holds meaning for them.
The three main causes that we feel best embody Bertrand’s spirit and character are:
- The Bertrand Might Endowment for Hope at UAB;
- Christopher for Kids; and
- Foundations for NGLY1 deficiency and Disorders of Glycosylation.
There are many additional causes for which Bertrand actively advocated or from which he benefited in his life, and we have listed them as well.
Bertrand Might Endowment for Hope at UAB [Give here]
We are pleased to announce the creation of a permanent endowment at University of Alabama at Birmingham (UAB) – the Bertrand Might Endowment for Hope.
With Bertrand as our guide, our family experienced the power of hope through science.
The permanent nature of the endowment ensures that Bertrand’s mission of helping individual patients will never come to an end.
We feel that giving at least one patient and family each year access to this kind of hope would be a meaningful way to honor this aspect of his legacy.
The purpose of these funds is to cover costs of individual patients in need of:
- advanced diagnostics;
- research to identify novel therapeutic options where none exist; or
- an “n = 1” clinical trial for a single patient.
Interest on the endowment will be reserved for science in the service of individual patients.
Our goal is to raise $500,000 over the next year, and then as much as possible every year thereafter, so that more and more patients may benefit every year.
There are many patients for whom the next scientific step may only be $5,000, $10,000 or $25,000 – and yet this is often an insurmountable financial barrier for the family. Costs at this level could be covered by the endowment in perpetuity.
This fund creates a renewable source of hope for families like ours and patients like Bertrand, and it creates an active legacy in which his younger siblings will be able participate as it unfolds over their lifetimes.
Christopher Kids: For spaces that serve children [Give here]
Bertrand was fortunate that he always had accessible, inclusive spaces.
Bertrand spent his final years in a house and bedroom that were designed for his needs.
His room was meant to accommodate his needs and the needs of his caregivers, and also to become the hub of activity for his siblings.
It worked: not only did it allow us to provide exceptional medical and daily care for him, but it also meant that Bertrand was constantly surrounded by family and friends engaged in activities in which he could share.
It was rare to walk past his room and not find his sister Victoria, his brother Winston or both sitting in his bed with him and watching TV or playing video games.
Recognizing that not all families with children of special needs can be as fortunate, we strongly believe in the mission of Christopher for Kids, which seeks to create such spaces for families without the resources to do so.
It’s a foundation run by the same architecture and design team that created Bertrand’s room, bringing accessibility and inclusion to the homes of other families in need.
Foundations for NGLY1 and Disorders of Glycosylation
Bertrand’s genetic disorder, NGLY1 deficiency, was part of the broader space of glycosylation disorders.
Bertrand helped co-found The NGLY1 Foundation, which in the last months of his life was absorbed into the larger foundation covering all disorders of glycosylation – CDG Care.
CDG Care will continue the patient support and scientific missions of the NGLY1 Foundation, including its active drug development project with NCATS at NIH and Retrophin.
Though we are saddened that Bertrand did not live to see the day that a cure reached him, we find it poetic, beautiful and inspiring that the day before Bertrand passed, Matt Wilsey (unaware at the time of Bertrand’s condition) sent an email to the NGLY1 patient mailing list with the following update:
I have great news to share after today's pre-IND meeting with the FDA. The discussion went exceptionally well. They were highly collaborative and informative. We received clear guidance on what we need to do over the coming months. Everything is doable. A significant gene therapy trial is on the horizon.
Bertrand’s father tearfully yet joyfully read this email to him at his hospital bed, letting Bertrand know that his hope of a cure was at last within reach.
It is incredibly meaningful to us that before Bertrand passed, he knew that a cure for his fellow NGLY1 brothers and sisters was on the way.
Bertrand benefited from and advocated for many causes in his life, including:
Comments for Bertrand’s family
You are welcome to place a comment on Bertrand’s online obituary.
You can also leave a comment on this twitter thread:
I'm struggling to find words: @bertrandmight passed last night. We are grateful for his 12 years with us -- 10 more than predicted long ago. His courage, his strength, his kindness, his cheer and his pure heart will always make him our inspiration. Our hero. pic.twitter.com/Gr18B15QCy— Matt Might (@mattmight) October 24, 2020
Archived Celebration of Life
Bertrand’s Celebration of Life service was on Sunday, November 1st 2020 at 3 PM Central at St. Luke’s Episcopal Church in Mountain Brook, Alabama.
For the in-person service, due to social distancing constraints from the COVID19 pandemic, entry was limited, but it was livestreamed so that all could share in the celebration of Bertrand’s life.
His memorial service is archived, with links to different parts here:
At the end, his siblings launched balloons in his memory:
Bertrand’s life and legacy
Note: We will be adding photos from across Bertrand’s life here later. Please check back.
Bertrand was a beautiful, kind, loving, happy and gentle soul to all whom knew him.
Not long after birth, Bertrand’s struggles and diagnostic odyssey began, as he faced a constellation of symptoms: seizures, movement disorder, developmental delay and an inability to make tears.
At eight months old, Bertrand’s developmental pediatrician concluded that something was wrong. It was the beginning of years of intensive medical evaluations. His medical team predicted that he would survive until age two or three at best.
In between frequent hospitalizations, Bertrand applied himself in his school and his therapy, always determined to exceed whatever limits his body had tried to impose on him: Bertrand danced; Bertrand climbed mountains; and Bertrand swam with dolphins. We’re grateful for many happy memories with him.
His body may have suffered throughout his life from NGLY1 deficiency, but neither his heart nor his spirit ever diminished or lacked for love.
Though with us for just less than thirteen years, Bertrand leaves behind a rich legacy:
2007 – 2011
At age one, Bertrand made his first pilgrimage for clinical evaluation at the NIH, visiting Dr. Constantine Stratakis for an evaluation of possible rare endocrine disorders.
At age two, Bertrand participated in a clinical trial for the use of autologous cord blood transfusion in the treatment of neurodegenerative disease at Duke University under Dr. Joanne Kurtzberg.
Bertrand traveled the country on a diagnostic odyssey seeking medical specialists that might have had any insight into what was causing his mysterious condition – or might have provided him any relief.
Finding no answers, Bertrand enrolled in a second clinical trial at Duke University under Dr. Vandana Shashi and Dr. David Goldstein – a pilot study on the use of then-novel exome sequencing to solve difficult diagnostic odysseys.
At age four, the results of the exome sequencing trial were released – and Bertrand was diagnosed. The success of the trial in diagnosing patients whose diagnoses had been otherwise intractable helped pave the way for the now widespread use of clinical genomic sequencing.
In that same effort, Bertrand also became the first patient ever diagnosed with the ultra-rare genetic disorder NGLY1 deficiency, effectively discovering a new disease in the process of receiving his diagnosis.
A month later, Bertrand became the first patient to use social media in the discovery of a patient community for a novel disorder, as Bertrand’s life story went viral.
- At age five, by having a confirmed genetic diagnosis, Bertrand gave the gift of both health and life to his brother-yet-to-be Winston by ensuring that he would never suffer from NGLY1 deficiency.
At age six, Bertrand participated in the first patient-clinician-scientist summit for NGLY1 deficiency at Dr. Hudson Freeze’s lab at what was then Sanford-Burnham.
Later that summer, Bertrand became the first NGLY1 patient to enroll in the NIH Natural History Study for Disorders of Glycosylation under Dr. Bill Gahl, Lynne Wolfe, Dr. Christina Lam and Dr. Carlos Ferreira.
Shortly thereafter, Seth Mnookin’s article in The New Yorker chronicled Bertrand’s journey from undiagnosed to an “n of 1” to founder of an entire patient community.
Later that fall, based on evolving understanding of the disease, Bertrand began an experimental treatment of N-acetylglucosamine. It allowed him to begin producing small amounts of tears and eye moisture, sufficient to avoid a proposed surgery to sow his eyes closed and preserve his vision.
Bertrand’s N-acetylglucosamine trial was the first of several “n of 1” trials in which Bertrand participated as science continued to gain insight into his disorder. Bertrand’s key scientific collaborators in these lifelong efforts to find a treatment include Dr. Hudson Freeze, Dr. Tadashi Suzuki, Dr. Clement Chow, Dr. Kuby Balagurunathan, Dr. Ethan Perlstein, Dr. Hariprasad Vankayalapati, Dr. Yiling Bi, Dr. Eva Morava, Dr. Steve Rodems, Dr. Wei Zheng, Dr. Atena Farkhondeh, Dr. Will Byrd, the entire NCATS Translator Consortium and Beth Aselage.
After advocating for legalizing medical CBD (a marijuana extract) for the treatment of children like him, Bertrand received the first medical hemp extract license ever issued in the State of Utah.
Bertrand was then subsequently given the Purple Star Award by the Epilepsy Association of Utah for his advocacy.
In January 2015, prior to the launch of President Obama’s Precision Medicine Initiative, the President personally conveyed to Bertrand’s father that Bertrand’s story had been an inspiration for the initiative.
Later that year, at the age of eight, Bertrand co-founded The NGLY1 Foundation, a patient support and research non-profit dedicated to NGLY1 deficiency.
Bertrand then advocated for the successful passage of the Pilot for Medically Complex Children’s Waiver Act in 2015 in Utah (which was then approved in full in 2018).
Bertrand also then successfully advocated for the passage of the Right to Try Law in the State of Utah. The law gave patients like Bertrand the “right to try” otherwise inaccessible experimental therapies. Has was personally invited by the governor to attend the signing. (In 2018, Right to Try became a federal law spanning the entire country.)
Bertrand then moved to federal advocacy: Bertrand met with Senator Orrin Hatch, asking him to be the founding Republican Senate co-chair of the bipartisan Rare Disease Congressional Caucus. Senator Hatch agreed, expanding the forum for voices of rare disease advocates to both chambers of Capitol Hill.
In 2016, Bertand began attending events at The White House, starting with the Easter Egg Roll and culminating in a Scientific Meeting for NGLY1 Deficiency followed by a party at The White House bowling alley for his 9th birthday.
At age nine, Bertrand’s foundation entered into a first-of-its-kind three-way agreement with Retrophin and NCATS at the NIH to begin drug development for NGLY1 deficiency, an effort that continues moving swiftly toward treatments today.
- At age ten, Bertrand finally qualified to use an eye-gaze assistive communication device, and in his final years, we began to experience a new depth to Bertrand. His vocabulary and expressiveness rose swiftly. He continued improving in his usage of his communication device through the end of his life.
- Bertrand appeared in The New York Times in an article on the emergence of a strategy for fighting rare diseases inspired by his life. That strategy has been actively embodied in the Hugh Kaul Precision Medicine Institute at UAB – and it is the strategy the Bertrand Might Endowment for Hope supports for patients. Bertrand attended several patient case review sessions at the Institute, where he could see others being helped first hand.
- At age eleven, his first bout with septic shock landed Bertrand in the ICU for six weeks. After nearing death several times, Dr. Shawn Levy at HudsonAlpha conducted custom metagenomic sequencing to look for the possible pathogens driving the illness. Extending an artificial intelligence tool on the fly to analyze the data, Bertrand’s father found an unusual strain of pseudomonas as the likely culprit in Bertrand’s body. Changing treatments to match resolved the infection almost immediately, Bertrand recovered rapidly, and he swam with dolphins to celebrate just one week later. Casey Ross and Hyacinth Empinado chronicled this fight and much of his life to date in STAT [pdf available].
In February 2020, at age twelve, even with his body weakening from years of ICU stays, he enrolled in an “n of 1” treatment trial at the Mayo Clinic, under Dr. Eva Morava, to begin a proposed treatment discovered by Dr. Ethan Perlstein and his team at biotech company Perlara. He passed his initial health screens to qualify, but hospitalizations immediately following his visit at Mayo coupled with the delays from the COVID-19 pandemic left him unable to start the treatment prior to his passing.
In March 2020, the same strategy and technology originally developed to find potential therapeutics for Bertrand and patients like him was applied to COVID-19, resulting in the immediate launch of a clinical trial of anti-androgen therapy for patients with COVID-19 at the VA in May 2020. (Trial results pending.)
On the day Bertrand passed, he became the first patient to donate his remains to the NIH Natural History Study for NGLY1 deficiency. Even in death, he hasn’t stopped furthering the science of his disorder.
After Bertrand’s passing, President Obama personally reached out to convey his sympathies:
The original announcement at the time of Bertrand’s memorial read:
It is with broken hearts that we announce the passing of Bertrand “Buddy” Might.
Happy and smiling only hours before, Bertrand progressed rapidly into septic shock on the night of Wednesday, October 21st.
Though hospitalized immediately, Bertrand declined rapidly and passed away Friday, October 23rd with the superhuman grace and dignity that had come to define his life.
While nothing eases our pain at his sudden and unexpected absence, we are grateful that he was not in pain and that he was surrounded by his loving parents all the way to the end.
We miss his courageous heart, his uncommon kindness, his quiet strength, his joyous love. We miss his infectious smile, his warm laughter, his soulful eyes.
We are proud of Bertrand’s legislative, digital, communal, medical and scientific achievements in his nearly thirteen years.
We ask that in lieu of flowers, friends of Bertrand please consider a donation to one of the causes below, which carries his impact forward.
In response to questions we’ve received:
Did he have COVID-19? No, at the time of admission to the PICU, he was negative for COVID-19 on both PCR and antibodies.
What caused the septic shock? Unfortunately, we don’t know. He was negative on the viral panels, and his cultures from time of admission never grew. Metagenomic analysis conducted during his admission was unable to complete due to the blood sample being unsuitable for sequencing.
Was he in pain? Mercifully, no. He was not in any pain for the duration of his PICU admission.