A Family’s Fight for Health Care and Social Support

Step into the world of rare diseases and learn about the challenges faced by families across Canada. In this inaugural episode of the I Care for Rare podcast host Sherrilynne Starkie welcomes Sandra Markus, the visionary behind the I Care for Rare campaign, to share her personal journey and the mission to create a collective voice for individuals, families, and caregivers living with rare diseases.

I Care for Rare is more than just a podcast; it's a social advocacy campaign that seeks to drive reform in healthcare and community support systems for rare diseases. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice.

In this show, Sandra shares her own experiences as a parent, highlighting the struggles her family faced when her son, Zach, was born with a rare disease. For 18 years, Zach's condition remained "undiagnosed". Sandra's narrative underscores the challenges of accessing appropriate support, including the limited availability of in-home care and respite.

Discover what led Sandra to take action. Her experiences and a recent family crisis convinced her of the need for change. She emphasizes the importance of collective action and governmental accountability in addressing the complex challenges faced by individuals, families, and caregivers dealing with rare diseases.

This podcast highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include:

• improving early detection,
• ensuring timely care,
• enhancing community support,
• providing access to promising therapies,
• and promoting innovative research.

"I Care for Rare" calls on both the Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.

About Sandra Markus: 

Sandra Markus is a brand, marketing and communications expert with over three decades of industry experience. She has worked with local, national and international brands of all types, ranging from public-sector and not-for-profits to private-sector consumer and technology. Sandra is a certified strategic business communicator by the International Association of Business Communicators (IABC) and is the Past President of the Ottawa Chapter. Sandra also holds a certificate in Change Leadership. She lives in Ottawa with her husband and two children. Her oldest son, Zach, was diagnosed at 18 years old with CHD2 myoclonic encephalopathy in 2018. Sandra is sharing her story with the hope that together, the patients, families and caregivers of those living with rare diseases and disorders, specifically in Ontario, can come together and show support for much-needed healthcare and community care reform for those living with diagnosed or undiagnosed Rare Diseases | Disorders can live in Ontario and Canada with a basic level of quality of life. 

We Need Your Help

Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues. 

Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017.

Here’s how you can help: 

• Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy.
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