The Isaac Foundation
The Isaac Foundation was established by a man named Andrew McFadyen. He created the organization in 2007 in honor of his son who is diagnosed with the rare disease mucopolysaccharidosis (MPS) VI. Its primary goal at the time of its founding was to help fund research for a cure. However, now the scope of the organization has become broader. They aim to provide support for patients and their families as well as advocacy for the rare disease effort as a whole. They no longer focus just on MPS but on all those living with a rare condition.
Based in Canada, they help to ensure that the treatments rare patients need are covered by the healthcare systems in the country.
However, this organization has come to understand that their current advocacy efforts could be stronger. So, they turned to the media to spread awareness of their organization and its mission.
Going Public
Part of the inspiration for turning to the media came from the #AccessForAll awareness program. It was designed to initiate the discussion of the barriers that exist for patients in terms of accessing treatment. Building on this movement, The Isaac Foundation turned to television.
The Foundation understands that without awareness, little can be accomplished.
With so few rare diseases having treatments in the first place, it is absurd that there are so many issues with access for the ones that do. The belief of this organization is that through collaborative efforts involving patients, industry, caregivers, as well as the government, the challenges will be addressed most effectively.
The ads began to air on television on August 20th.
“If we believe in the possibility of exceptional healthcare, we have to work together to take care of these patients, and help elevate their voices.”
If you are a rare patient or are the caregiver of a rare patient who is having trouble accessing treatment, feel free to contact the foundation to learn more about how they may be able to help you and your family.
You can read more about The Isaac Foundation and its efforts here.