Team Saij Research Efforts
Registered in 2011 as a 501 (c) 3 charitable organization, Team Saij – Simply The Best has raised nearly $500K for Duchenne Muscular Dystrophy (DMD) research. The landscape of this rare and deadly genetic disorder is changing quickly and while there is so much to be thankful for in terms of longer life expectancy and an increased quality of life for Saij and all boys affected by this disease, there is still so much to be done. Our biggest fight is against time, and the challenge is how quickly we can find a cure to benefit this generation of boys.
Last year, TEAM SAIJ alongside our family, funded various studies including the development of endpoints to measure upper body function in non ambulatory (not walking) boys using the Microsoft Kinect System to measure the functional space a person can use. This allowed boys, like Saij, to participate in trials they were previously excluded from.
In addition, Team Saij initiated a study at John Hopkins University to explore the possibility of administering embryonic stem cells directly into tissue with the potential of re-engineering damaged muscle, thus creating healthy, dystrophin producing cells. Initial studies on MDX mice in the lab show encouraging results.
Similarly, there many more feasible studies that show potential promise but require ‘the opportunity’, a reputable institution, renowned physicians and scientists and ‘seed money’ to demonstrate initial proof of concept. With an investment of $150K and 12-18 months, we can start studies like this around the world that would otherwise never be brought to fruition. Our objective is to bring more of these potential therapies to clinical trials as quickly as possible.
Currently, we are excited to be talking to scientists in Europe and the US who are working on mechanical devices to support upper body function. This technology has been successfully used on war veterans and is currently piloting feasibility in stroke patients.
In DMD, the hardest part is watching boys slowly lose muscle functionality. Like most boys who eventually lose the ability to walk, Saij was prematurely off his feet by the age of 8. Recently, we are noticing significant upper body weakness and restricted use of his arms. A power chair is a great replacement for walking but losing the use of one’s arms is the onset of a downward spiral of degeneration that greatly impacts the quality of life in DMD patients. With the support and generosity of friends like you, it is possible to END DUCHENNE.