Karen Utley and Amanda Jaksha of IFCR – Rare Disease Advocacy

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Left: Amanda Jaksha, IFCR Treasurer; Right: Karen Utley, IFCR Co-Founder & President

When your child is ill, it is natural to take action. Yet, when the illness is a rare disease, it can be extremely difficult to know what action to take. When faced with exactly that situation, Karen Utley and Amanda Jaksha decided to develop resources for their rare disease community.

Karen Utley is Co-Founder & President, and Amanda Jaksha is Treasurer, of the International Foundation for CDKL5 Research. The IFCR’s mission is to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive. Both Karen and Amanda are mothers of children affected by CDKL5 Deficiency Disorder.

In this lively discussion, we talk about:

  • Centers of Excellence – how the IFCR launched its CDKL5 Centers of Excellence, and how rare disease non-profits can work with the medical community to help create them.
  • Patient Advocacy – how to build relationships and partner with your medical team, and when to ask for resources.
  • Social Media Communities – how social media connects the rare community, and what the risks are of oversharing.

One of the hallmarks of CDKL5 Deficiency Disorder is intractable epilepsy. During our interview, Karen’s daughter had a seizure and we paused our discussion while Karen and her nurse took care of her. Therefore, please excuse any choppy editing in this episode; we have strived to make the recording as smooth and clear as possible.

This is an episode of the Leading with Health podcast. In this podcast, healthcare leaders join host Jennifer Michelle to discuss their vision for the future of healthcare. Jennifer also shares thoughts and insights from her career at the intersection of public health and healthcare marketing.

Jennifer Michelle, MPH, EMT is a marketing consultant specializing in the healthcare sector. President of Michelle Marketing Strategies, she has a Master’s in International Health & Epidemiology and volunteers as an EMT.