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:

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:

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:

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.

To support the Bertrand Might Endowment for Hope, please give here.

Christopher Kids: For spaces that serve children [Give here]

Bertrand's room, October 24th 2020

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.

The Grace Science Foundation [give here] is specifically dedicated to research for a cure to NGLY1 deficiency, and it is run by another pair of dedicated NGLY1 parents – Matt and Kristen Wilsey.

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.

Additional causes

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.

— 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










Archived announcement

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:

  1. 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.

  2. 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.

  3. Was he in pain? Mercifully, no. He was not in any pain for the duration of his PICU admission.