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In a CBC article published three days ago, “A Calgary family has learned a rare genetic mutation is the root of their son’s severe autism, and now they hope the discovery will lead to a cure”.
The family has partnered with The MSSNG project, a collaboration between the Hospital for Sick Children, University of Toronto, Autism Speaks, Verily and DNAstacks. According to a 2019 Autism Speaks Canada Article, “Launched in 2015, the MSSNG database started as a collaboration with SickKids and Google and shares data globally in 58 institutions across 16 countries producing transformational autism research studies. This has included 18 newly identified autism risk genes. The project is the only one of its kind and has collected data from over 12,000 families using whole examinations of a person’s DNA to build a database on autism. The project has found that in 20 percent of the participants, the mutation was the root cause of autism.
In responding to the article Dr.Steve Scherer, chief researcher at the Hospital for Sick Children in Toronto, said new technology is playing a role.
“Lots of the pharmaceutical companies and biotech now have jumped into the game because they’re very good at screening the existing compounds that they have against cells,” he said.
“The Holloway family are involved in such studies, and I know that their cells are being turned in the laboratory into what we call stem cells and then turned into brain cells to screen for genetic mutations.”
The boy involved, Ishaan Holloway is 17-year-old award-winning poet and has made significant behavioral and learning progress through therapies and interventions.
The current research done by MSGG seeks to determine whether existing drugs can be repurposed to prevent the effects of the genetic mutation that Ishaan has.
Once the study shows a family has hit one of the listed genetic conditions, they are provided the information through a genetic counselor to help them understand the behavior of their child trajectory and appropriate interventions for it. Parents can also predict the chances of their next child having autism.
Scherer said the study should remove any stigma.
“It explains why autism came about in that child…it’s really a genetic change, and these are sporadic genetic changes that happen in all of our DNA.
https://www.autismspeaks.ca/autism-speaks-mssng-project-reaches-10000-genome-milestone/
https://www.cbc.ca/news/canada/calgary/genetic-mutation-autism-calgary-family-hope-1.6562560
Our second story is one that will be covered over the next few weeks regarding a lawsuit in Westchester County New York. Five years ago, Westchester on the Move, A disability rights organization headquartered in Westchester, filed a lawsuit against transportation company Lyft, in which the organization asserted that Lyft was violating the Americans with Disabilities by not providing Wheelchair Accessible vehicles that accommodate non-foldable wheelchairs. Lyft officials appeared in a White Plains, New York court regarding the allegations. According to NBC News, Lyft plans to argue that as a private company they are exempt from the Americans with disabilities based on Title III of the Civil Rights, which stipulates that public services may not discriminate against individuals with disabilities. In responding to NBC, A lyft official cited a lack of vehicle and driver availability as reasons why a solution to the issue of expanding access to Wheelchair Accessible Vehicles is difficult. The official said, “There is an extremely limited supply of these specially manufactured vehicles across the country, and even fewer among the population of rideshare drivers. Despite these obstacles, we’re constantly working to improve the reliability of the service and find solutions to address supply challenges.”
Catch my interview with Westchester on the Move’s attorney in the lawsuit, Jeremiah Frei-Pearson, next week on the WFHB Local News. Our story will also feature a perspective from Lyft on the current trial.
That’s all for this week’s Disabulletin, I’m Abe Shapiro. Live and Learn.
