David McDougall, known to many in the WMS community for his work creating the Nemaline Myopathy Support Group, has died.

David was 59 years old and was diagnosed with nemaline myopathy at the age of two after a biopsy. It was only when he started using the internet in 1999 that he was able to reach out to other people who had grown up with, were living with, or who had family members with nemaline myopathy.

In his biography on Nemaline.org, David described going to a “school for disabled kids”, where many of his peers had muscular dystrophy. Seeing similarities in his own condition, he was concerned that he was “going to end up the same way”. Professor Alan Emery was able to provide David with the reassurance he needed that he didn’t have muscular dystrophy.

Although subject to physical limitations – David was unable to walk more than 40-50 meters for most of his adult life and relied on a wheelchair when out and about – David enjoyed a fulfilling career with the Medical Research Council, working in the same hospital in which he was born in Edinburgh. Starting in the electronics shop, David built circuit boards and other items for prototype computers being designed for the medical research market.

As this work ended, David moved onto using PCs in the early days of the Internet. He began creating drawings and graphics for scientific papers and seminar posters. Eventually the Pattern Recognition dept. closed altogether. A job came up immediately in the admin section, so David applied and worked doing Purchase Ledger for almost 12 years, until redundancy in September 2006.

Through his knowledge of the internet, David had started building a network of contacts of people with Nemaline Myopathy and researchers working on a better knowledge of the disorder.

The Nemaline network now has 700 members. In 2004, David and some friends organised the first NM Convention where leading scientists from Finland and Australia gave talks on their genetic research.

Carina WallGren-Pettersson from the University of Helsinki said: “From the first time I met David, in Edinburgh so many years ago now, arriving in his superfantastic car, I appreciated his friendliness and his sense of humour. We ate potato skins together and got to know each other, and this sparked a wonderful collaboration, which lasted all through the years.

“I admired David’s unfailing persistence, his respectful, discreet and tactful way with his fellow nemaliners, his sound judgement in delicate matters, and last, but certainly not least, his impressive personal integrity.

“The constructive initiatives he took in the international nemaline community over the years have left lasting results. David was greatly appreciated and much loved by so many around the world.”

Nigel Laing, Emeritus Professor, Perth, Australia also paid tribute to David, saying: “My journey with nemaline myopathy changed completely when David McDougall contacted me about the Nemaline Myopathy Support Group he had established for nemaline patients. It reframed my group’s work in the context of all the nemaline patients around the world that had contacted him and have continued to contact him. I found it wonderful and somehow a great sense of strength that two Scotsmen on different sides of the earth were working on nemaline myopathy in their different ways. It was a particular bond.

"The Nemaline Myopathy Patient Congress David organised in Scotland in 2007 was a watershed event for nemaline myopathy. Bringing together nemaline patients from around the world with nemaline researchers was pioneering.

"What David did for nemaline myopathy was remarkable. He changed the face of nemaline myopathy. His legacy cannot be overstated.”

David’s work touched many lives, providing people with resources and support as they dealt with personal diagnoses. Amy Beffa Rhodes is quoted on the Nemaline.org website: “For 18 years I have been a part of a very special family. This is not a family of blood relation, but a family that shares similar genes. A family that doesn't live in the same town, state or even country most of the time, but talk more than neighbours. A family that shares triumphs, sorrow, goals, laughs, tear, questions, support and love. And family that I have turned to many times over the past 18 years.

“Thank you David McDougall for starting this just weeks before our girl was born. Somehow you knew I would need this for all those years and many more to come. Love my NM family.”

David will be very much missed by the “nemaliners” all over the world and the medics and scientists with whom he collaborated over many years.