This year we decided to tackle the inclusivity problem we found facing both the aspects related to our project as well as aspects affecting research and its development as a whole.
What is it like to fight a disease that has affected your life? It is an entirely different feeling to have your work bring you joy while performing and putting in the work and sweat in order to someday hopefully develop a treatment for a disorder or disease that has had a toll on your body or even a loved one. We finally figured out the project we are going to be working on this year. We sought out doctors who had encountered people suffering from this disorder. However, it is an entirely different thing to know about a disease and to live with it in your everyday life. Hence, we went on a search quest to find more information about the everyday struggles of those who actually suffer from the disorder. We land on the page of Kevin Alexander. Who? He is the person who devoted his life to spreading awareness about PKU. He has been struggling with this disorder since he was an infant. He never gave up on those who needed his help, no matter how stressful and time-consuming it was for him. He isn’t doing it for any reason other than he wants other people to live better and suffer less than he did. We describe such an act as altruism. He opened our eyes to how impactful it is to be performing something because you just want the welfare of others with no consideration for any personal gains, money, or fame.
The reason why it is dangerous isn’t because of that thing alone, but because the individual doesn’t know that it is robbing him of his greatest asset, which is brain power, until it is too late to take action since it is unfortunately an irreversible disorder. That is why we decided to make our project designed for PKU patients in a pay it forward design.
Because our mission didn’t stop at diagnosing those individuals in a manner more accurate than any of the other old-fashioned methods, but also making sure that they have the necessary grounds in order to further develop the methods of treatment in the future by enabling them to help themselves by themselves. We altered our courses to specifically include PKU, so they would be experts in their own disorder. Nobody can be more motivated than the person that needs the change, as Vincent Van Gogh once said. Great things are done by a series of small things brought together. That is why we didn’t stop there. We wanted to give those newborns an even better opportunity, so we created a game designed precisely to help those who are diagnosed by our screening device to learn more about the power of science and synthetic-biology. Now they will know that synthetic biology is the reason why they are diagnosed at such an early age and why they are able to maintain such mental capability by eliminating the false negatives that arise from other methods. They will be brought back for prognosis by the QR code system we designed for easier access to those individuals.
We designed such a system influenced by many factors, and one example of the success of such implementation is a startup dedicated to restoring dignity to patients after undergoing a surgical procedure that resulted in the founder's life being saved.
We expanded our efforts to research for common reasons that affects the whole synthetic-biology learning experience. We decided on targeting the children that bear problems in communication as communication is the main barrier that makes a child unable to take part and learn in the various teaching institutes. That is why we devoted our human practices outreach to find the various professionals that could help us with ending such a barrier. We have had great aid by Dr. Mahmoud Abdelgawad. Master student in Phoniatrics department in AFCM. He had the greatest influence in recruiting other professionals from the same field devoted to help those children overcome this trouble and enabling another segment of children to enter the field of learning and synthetic-biology, and teaching them more about synthetic-biology and how it plays a role in changing the world.
Our methods included regular teaching groups focusing on phonological skills, mainly including the ability to identify and process word sounds. Helping them to identify the sounds in spoken words, combining letters to create words till they are able to create more complex sentences and most importantly monitoring their own understanding while they read and making sure they do follow what is taught even encouraging them to ask questions if they notice any gaps in their understanding.
Realizing that colour blindness can represent a major hindrance for those researchers who interpret the color-based results is a major concern, especially in our line of work. Because our project doesn’t only detect whether the newborn has the disorder or not. It also dictates a change in the course of the diet all through life. If the researcher failed to interpret such results, the child would fall victim to the healthcare system. In our project, we dodged such a lapse. We specified certain colours for the detection lines in our lateral flow assay (LFA). By choosing blue for the LFA zones, we guarantee a color-blind-friendly design for our diagnostic device. We also designed a software tool that you can upload a picture containing the results of the kit to and, with a colorimetric analyzer tool, it will produce the result in the form of text easily interpreted by the individual.
We figured out that most of our work with children has been beneficial as well for those who endure dyslexia that’s why we decided on publishing our project in a plain language easily to be understood by anyone interested in knowing more about our PKU project but in a much easier manner. Proving to be advantageous explicitly for those suffering from dyslexia making our project and synthetic biology more accessible in addition to further spreading knowledge in a new world were the brief messages are the best way of grasping attention especially for the youths.
