It's day ZERO

Jakob was diagnosed with ADA SCID 10 days after he was born thanks to the Newborn Screening test implemented in Alberta in 2019. Jakob's medical journey has been a long and tirelessly fight to bring access to treatment for him and many more patients that urgently seek Gene therapy treatments. 

On July 19th Jakob would received his Stem cell transplant or Gene Therapy thanks to the incredible work of Dr. Donald Kohn and his team. Celebrate with us the beginning of a new life for Jakob by donating to this kind campaign. Your contribution would help many more families like us and patients like Jakob, giving opportunities through education, financial aid, emotional support and more resources that are so necessary when you have to face a complex medical journey like SCID. 

We believe that Jakob, ´Our Edmonton Bubble boy´ would be able to show the Government of Canada the impact that Gene Therapies and clinical trials can create for many patients, an inspiration to all of us to keep working hard for patients, for rare genetic conditions, addressing the potential and at the same time the financial relief for our health care system through the implementation of these therapies, the recognition of the word Inclusiveness as part of our core values in the RARE community and the evolution on curative therapies that would give families many more days with their sick children just like we want fiercely for Jakob to have next to us.