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The ALS Therapy Development Foundation, now called the ALS Therapy Development Institute (ALS TDI), was established by Jamie Heywood in 1999. The founding of this organisation began after Jamie’s brother, Stephen, was diagnosed with the condition aged just 29. Jamie and Stephen soon discovered that there was no cure and treatment options were non-existent. While Stephen has sadly passed away due to his ALS, through ALS TDI Jamie continues to work towards discovering treatment options to assist others diagnosed with the condition. The PDF attachment provides more information on ALS and its symptoms. Thibaut de Roux contributes regularly to the ALS charity, The Thierry Latran Foundation, after losing a close friend to the condition several years ago. ALS TDI aims to bridge the gap identified in preclinical therapy development for ALS through funding innovative research. 

Research Into Treatments 

At present there are minimal medical treatments for ALS and no cure. The treatments that are available are aimed at alleviating symptoms and prolonging life, but they do nothing to prevent the progression of the disease. ALS TDI is the foremost drug discovery laboratory in the world with a sole focus on developing treatments for ALS. Research in the preclinical, clinical and translational stages of development all takes place under one roof, pursuing all the best ideas for drugs, therapies and medications that may be able to slow or stop the progression of ALS and end the disease. ALS TDI has become the world’s first non-profit biotech organisation to develop a potential treatment for any disease, bringing AT-1501 through FDA review and up to the stage of clinical trials. 

A full 87 percent of every amount donated goes directly to research at ALS TDI, which compares to a 75 percent average for funded research laboratories. 

Four Pillars of Discovery 

ALS TDI works under the guiding principles of four pillars of discovery for research into effective treatments. The first pillar is to operate, bringing more treatments to the stage of clinical trial and therefore bringing more hope to a greater number of people with ALS. The second pillar is to validate, capturing all the complexities of the disease in a variety of models, both cell and animal, to test potential drugs more rigorously. The third pillar is to aim, working to improve how clinical trials for ALS patients can be more efficient. Currently, trials are being slowed down through the requirement for many individual participants. ALS TDI aims to use emerging technologies to make these trials faster and more efficient without compromising on patient safety. The fourth pillar is to learn, through partnering not only with medical professionals but with individuals living with ALS. The Precision Medicine Programme from ALS TDI brings together data on many ALS patients, including genetics and family history, medical history, patient cell biology and biomarkers to result in a better understanding of the disease and the processes that influence its progression. An explanation of biomarkers can be found in the short video attachment. 


Alongside innovative research programmes, ALS TDI also provides numerous free resources designed to answer the questions of patients who have been diagnosed with the disease, as well as their loved ones. These include information about all current and upcoming clinical trials; details of the Precision Medicine Programme; all the latest news about ALS; a forum to connect researchers, caregivers and ALS patients around the world; and much more. Webinars, podcasts, live presentations led by experts and the opportunity to join the ALS community are all part of the ALS TDI package. 

Some statistics for ALS can be seen in the infographic attachment to this post.