Welcome back to our podcast The Patients Speak.

Today we’re going to hear the story and the journey of a very special guest, Seth Rotberg. Seth has been diagnosed with Huntington’s disease (carrying the gene for it) and has become a patient advocate for genetic testing, in general, for many rare conditions.

Seth is more than just a patient advocate – he is the co-founder of a non-profit Our Odyssey, is an award-winning speaker, and helps make a difference in the community by immersing himself in the patient perspective

In our interview with we discuss with Seth:

  • The role of a patient advocate
  • The role patients play in participating in Clinical Trials
  • Seth’s Call to Action

Seth’s mission statement:

“Live as if you were to die tomorrow, learn as if you were to live forever.”

Seth saw his mom go through Huntington’s disease for 17 years of his life and it slowly deteriorated her, both physically and mentally. “It was like watching someone on an island, where the water continues to go up and up and up, and there’s nothing for you to do besides just watch.”

Role of a Patient Advocate

Genetic Testing: Planning and preparing for his life ahead.

  • Whether it’s a future family,
  • career setting,
  • understanding what may happen if there’s not a treatment in time.

Genetic Counseling: Offering resources and support

  • Symptom hunting – “Is this a symptom of my disease?”
  • Survivor’s guilt – “If I tested negative, and having a sister who’s at risk and what is that going to make me feel like?”

First 3 Steps:

  • Actively listening
  • Learning
  • Implementing a planner strategy

Clinical Trials and Community

Development and Participation:

  • Community outreach to patient advocacy organizations

  1. connect you with other community members and gathering insight
  2. having multiple meetings with these different community members, patients, caregivers, and key opinion leaders
  3. understanding what are the different perspectives and honing in on what are the challenges of the community, and then how can we potentially help it?

  • Work closer with patient advocacy organizations

  1. trial awareness
  2. trial education
  3. making sure the community knows that this is an option.

Call to Action

“Let’s listen to them. Let’s understand them better, and then we can try to find ways to work together with them.”

  1. Treating us as partners and as patients
  2. Make sure that you are truly working side by side with the community you’re trying to serve. Build trust in those relationships and being transparent
  3. Learn from other community members, bring them in, whether it’s through a lunch and learn, or speak engagement, or attending conferences

It was truly engaging and insightful talking with Seth Rotberg today. We hope you enjoy this interview today and to learn more about Seth’s journey and patient advocacy go to www.sethrotberg.com

Also, be sure to check his Tedx talk and watch his FULL STORY.

@srotberg15 on Instagram

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If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com