Conner’s Crusade is an initiative dedicated to advocating for newborn screening in underserved populations and health systems, equity in access to rare disease treatment, rare disease education/awareness, and in providing emotional support for families, with a particular focus on adrenoleukodystrophy and other leukodystrophies.

Our son, Conner Finn, was diagnosed with adrenoleukodystrophy in June 2020 at the beginning of the COVID-19 pandemic. He was diagnosed by chance and presented with cerebral involvement upon diagnosis, requiring an emergent stem cell transplant. With no ALD specialists in Canada, no timeline for treatment, and being denied out-of-country coverage, we were forced to liquidate our retirement savings to get our son to a qualified treatment center in Minnesota. After fighting for a year and a half after Conner’s transplant and appearing in the Saskatchewan legislature, our family won our case to have Conner’s life-saving treatment covered. At the time, the Saskatchewan Ministry of Health committed to leading the charge in Canada on the development of a rare disease strategy. To date, nothing has been done on this initiative. Our family has a responsibility to other Canadian families and ALD and rare families everywhere to continue the fight.

Our family is deeply committed to providing emotional support to other families facing rare disease diagnoses/treatment/loss, advocating for newborn screening on both sides of the border, supporting rare disease research, and equity in access to specialist treatment. We have advocated for newborn screening both in Canada, Kansas, and Montana and for the approval of gene therapy with the FDA so that boys without a match on the donor registry will have an avenue of treatment, previously unavailable to them.

We hope you will join us on the journey!