From talking about her experience as a TAPS parent, to her life as an Australian in the Netherlands, Stephanie Ernst is available for your next speaking engagement.
If you’re looking for an active, engaging speaker who can speak about building online communities, or a passionate patient advocate who has taken the plunge into research and building a foundation, then read on to discover how we can work together.
Advocacy In Action
From discussing my experience as a TAPS patient, to speaking about creating an online community, I’m happy to talk to you about my passion. Your next event needs a speaker who can talk from the heart, bring in some humor, and speak with empathy and enthusiasm.
Patient Led Advocacy
I’m passionate about breaking down the doctor/patient barriers, and will lead a rousing conversation about the benefits of patient-led advocacy groups, and how we can work together to bring change to the way doctors and patients interact.
I also can bring a unique point of view to your symposium by talking about how patients respond and react to a diagnosis, and what we need to hear from you when you’re delivering news – good or bad.
Creating Online Communities
From my own experience 8 years ago, when I felt like I was the only one with my diagnosis, to a thriving online community focussed on a rare disease, I firmly believe in the power of finding your online family. Our community is built based on transparency, trust and advocacy, and a little disfunction – just like a real family. Creating safe, respected online communities doesn’t have to be difficult.
Rebuilding and Connection
Leaving behind your life in one country and rebuilding in a new one is a challenge. Let me speak about my experience, and how it shaped the person I am. A humorous and insightful view into the expat experience is what I can offer.
I’m up to date with TAPS research, and able to explain this rare diagnosis in everyday terms, because I believe that information should be accessible to everyone. TAPS-splaining is a passion of mine, and I can help your patients understand their diagnosis, and help them communicate their concerns to you.
See And Hear Me
Interested in what I have to say? Here’s some of my appearances and interviews with different groups and people.
The Rare Fair, January 12, 2022 – Panelist: Oversharing: Managing Your Social Media with your Child in Mind
Fetal Health Foundation
In this webinar, held in November 2020, I was a panelist discussing why a dedicated foundation for TAPS was needed, and about what fuelled my passion to create this. Other panelists included Lonnie Somers of the Fetal Health Foundation, Dr. Enrico Lopriore, and Dr. Femke Slaghekke.
Talking TAPS with Twiniversity
Appearance on Twiniversity: Talking with Natalie about TAPS. March 5th, 2021
Chatting with Natalie Diaz, the founder of Twiniversity, one of the most comprehensive and amazing online resources for twins was a highlight. In this episode, I chatted about the reasons why TAPS screening is so important and shared some insights into my story.
“Stephanie is able to effectively read and address the audience in a manner that can be easily understood by all. She takes difficult medical jargon and explains it thoroughly without leaving the audience feeling as though they’ve missed anything. She is able to answer questions as they are asked while still ensuring her key points are not missed and maintaining professionalism.” – Teralynn Bennett, TAPS Parent
Here in Holland #5: Blogger’s Battle
One of the most difficult, yet amazing experiences I had was recording this podcast with Andy Clark. Sharing your story is a challenge for the first time, and Andy made it a wonderful, engaging experience. Other interviewees: Dr. Enrico Lopriore.
The One With The Symposium Speech – first presented at the first TAPS Symposium on October 28th, 2014.
This was a highlight, just 10 months after the birth of my girls I was invited to share their story, and my own patient journey with the very first TAPS Symposium held. Whilst no recording exists, I shared the speech I gave on my blog.
Speaking Engagements With Stephanie Ernst
To discuss having me speak at your function, or in your webinar, contact me at firstname.lastname@example.org, or via my contact page.