Rare Trait Hope Fund

Barbara Insley, LL.B, CFA, CIPP/C, Executive Director, Rare Trait Hope Society , and her team joined John McKenzie, CEO, TMX Group, to close the market and raise awareness of Rare Trait Hope’s mission to support research and fund therapies to treat children with rare diseases. Rare Trait Hope Society was established to fund research and human clinical trials aimed at curing childhood rare diseases not supported by our medical system. Their current project involves funding a gene replacement therapy to cure Aspartylglucosaminuria (AGU), a fatal childhood neurodegenerative disease. As the disease progresses, AGU children develop intellectual and motor disabilities, lose their language skills and ultimately face an early death. This clinical trial is a beacon of hope, not only for children with AGU, but also for rare diseases at large. It has the potential to set precedents for future trials on neurodegenerative disorders and to expand understanding and treatment options for diseases considered uneconomical by the pharmaceutical industry.

On Thursday, April 11, TMX Group invited Rare Trait Hope to ring the closing bell at the Toronto Stock Exchange to raise awareness and support research into ultra-rare diseases. Following the TMX Market Close, John McKenzie, CEO of TMX Group, will moderate a thought-provoking panel of gene therapy experts. The panel discussion will be succeeded by a cocktail reception aimed at raising funds for the initiation of AGU clinical trial. This trial seeks to utilize gene replacement therapy to cure #Aspartylglucosaminuria (AGU), a rare and fatal childhood neurodegenerative disease. The panel will precede a networking and fundraising cocktail reception at the TMX Market Centre. The event is expected to bring together over 100 executives, professionals, and stakeholders, including the TMX Group’s Senior Management Team, representatives from both private and public capital markets firms, securities regulators, and medical professionals, offering an unparalleled networking opportunity. Sponsorship opportunities are still available for this event. If you are in the area and/or wish to network, please reach out for more information. #agucure?#raredisease?#genetherapy?#genetics?#raretrait #raregeneticdiseases?#aspartylglucosaminuria Christiaan Engstrom, Colin Cook, Barbara Insley, LL.B, CFA, CIPP/C, Imad Mohsen

??? Episode 126 of The Genetics Podcast is live! ?? In this episode, Patrick is joined by Julia Taravella, Executive Director of Rare Trait Hope Fund. Tune in to learn about: ?? The founding of Rare Trait Hope Fund and its goal to develop a gene therapy cure for aspartylglucosaminuria (AGU) ?? Julia’s experiences as a mother raising two children with a fatal disease ?? Upcoming research developments for AGU and other ultra-rare diseases And much more! Listen by following the link below ?? or simply search ‘The Genetics Podcast’ on your go-to podcast platform. https://pod.fo/e/22708b #genetics #thegeneticspodcast #sanogenetics #raretrait #raregeneticdiseases #aspartylglucosaminuria #AGU