I am the proud mom of a sweet nine year who has taught me more about life than I could ever have imagined. Everly was born with a very rare and life threatening syndrome called Megacystis Microcolon Intestinal Hypoperistalsis Syndrome. More information on Everly and her syndrome can be found in the “Advocate” drop down menu.
Everly has been through far too much in her little life, but she continues to fight and we continue to fight for her. The saying that a mom (or any caregiver) must wear many different hats has taken on a life of its own with Everly. One of my most important hats I proudly wear as Everly’s mom is her advocate. My biggest goal in life is to do everything in my power to provide Everly the quality life that she so deserves and with this comes advocating for her day in and day out.
Through this experience with Everly, I have also learned the importance of advocating for myself in order to maintain my physical and emotional well-being. It has taken me time to come to a place of awareness of my needs in each piece of our journey. In order to take care of my daughter, I need to take care of myself. This means listening to my mind and body for what is needed in that period of time in order to maintain my health as well.
Let’s Work Together!
I have a true passion for advocacy work related to children with special needs and medical families/ caregivers. It would be an honor to collaborate with you in any way you see fit! Please see below the variety of ways we could possibly partner together, along with past related experiences and testimonials.
Prices and additional information can be discussed further by contacting me at [email protected]. I look forward to hopefully working with you!
Possible collaborations include, but are not limited to:
Medical Presentations
Advocacy Presentations for Adults
Advocacy Presentations for Children
Support for Parents/Families of Children with Special Needs
Support for Medical Caregivers
Author’s Visit (see my work an an Author)
Reset Strategy Demonstrations (see my work an an Author)
Design a Reset Strategy area focused around the book (see Correlating Learning Space in Author Drop Down Menu)
Open to any and all other ideas!
Past Related Experiences
Academic Positions:
Grand Forks, Discovery Elementary: Unlicensed Assistive Health Care Personnel (Nov. 2022 – Jan. 2023): Assist registered school nurses in providing health services to individual students according to individualized healthcare plans (IHPs) and/or district policies.
Grand Forks, Discovery Elementary: Special Education Paraprofessional (Sept. 2018 – August 2021): Accompanied daughter to special education preschool and intro to kindergarten to ensure her medical needs were being met. Assisted classroom teacher in implementing strategies based on the special needs and abilities of other students in the classroom.
Conference Presentations:
Peterson, E.S., (2022). Megacystis Microcolon Intestinal Hypoperistalsis Syndrome. Information presented at North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition annual conference, Orlando, FL.
Peterson, E.S., (2019). Parent Advocacy for Children with Special Needs. Presenter at the National Advocacy Event, Washington, D.C.
Peterson, E.S., (2019). Megacystis Microcolon Intestinal Hypoperistalsis Syndrome. Information presented at the Digestive Disease Week annual conference, San Diego, CA.
Academic Service:
Presenter at the University of North Dakota Medical School, Grand Forks, ND (Jan. 2024)
Presenter for the Medical Gus Gear Company: Rays of Hope (Dec. 2023)
Counseling Program Advisory Counsel, Discovery Elementary, Grand Forks, ND (Nov. 2023 – Current)
Presenter at the Grand Forks School Board Meeting, Grand Forks, ND (April 2023)
Presenter at SPED 389 Foundations of Special Education. Mayville State University,Mayville, ND (Nov. 2019)
Presenter at SPED 389 Foundations of Special Education. Mayville State University,Mayville, ND (Dec. 2018)
Presenter at T&L 252 Child Development. University of North Dakota, Grand Forks, ND(Sept. 2016)
Presenter at SWK 255 Introduction to Social Work. University of North Dakota, GrandForks, ND (Sept. 2016)
Presenter at SWK 255 Introduction to Social Work Online. University of North Dakota,Grand Forks, ND (Sept. 2016)
Additional Service:
North Dakota Cross Disability Advisory Council, North Dakota Capital, Bismarck, ND (Dec. 2023-Current)
Bio Girls Volunteer, Grand Forks, ND (June 2023-Current)
Mission Moment Presenter, Make a Wish Board of Directors Meeting, Fargo, ND (March 2023)
The Megacystis Microcolon Intestinal Hypoperistalsis Syndrome Non-Profit Foundation: Social Media Coordinator Co Chair (Sept. 2022 – Current)
The Megacystis Microcolon Intestinal Hypoperistalsis Syndrome Non-Profit Foundation: Vice President (Sept. 2016 – Current)
The Megacystis Microcolon Intestinal Hypoperistalsis Syndrome Non-Profit Foundation Fundraising Committee (Sept. 2019, Sept. 2020, Sept. 2021, Sept. 2022)
Presenter through Zoom at NURS 358 Nursing Principles, Applications, andInterventions. Northern State University, Aberdeen, SD (March 2020)
National Advocacy Event on the Hill participant for the International Foundation forGastrointestinal Disorders, Washington, D.C. (June 2019)
***Full Resume can be found at the top of the homepage under the “About” drop down menu.
Testimonials:
“Last year, I began experiencing an increased amount of worry. Later, I would find that this level of worry was anxiety. As the days went on, the worry increased, and the symptoms intensified. I went from living life to living in a fight or flight mode throughout the day, not sleeping, and losing my appetite. I had no idea what to do and where to start. This is where Erin came to the rescue. I visited with Erin, and she understood exactly what I was going through and knew the resources I needed to begin healing. Erin not only connected me with the resources I needed, but she also found a way to find time in her busy schedule to call me or text me when I needed encouragement on my journey. I can say that my journey was difficult, but having Erin’s support and knowledge of mental health resources is what helped me to heal. “
“Erin Peterson delivered a lecture to our medical students as part of their second-year boot camp program. She was asked by the University of North Dakota School of Medicine & Health Science’s Simulation Center administration to present her family’s medical story in a lecture entitled: “Adversity in Medicine”. The students were captivated by Erin’s ability to share such a personal story in a way that was professional and emotional, yet informative. Medical students at this stage of their learning and training have had little exposure to rare diseases and pathology, yet Erin delivered the content in an applicable manner that implored the students to ask questions and interact despite the lecture format. Erin is an engaging and humble speaker who grasps the minds and hearts of those who listen to her speak. Erin’s medical advocacy for her daughter is touching and inspirational.”
Rachel Osowski, Standardized Patient Program Coordinator & Administrative Operations Assistant, UND School of Medicine & Health Sciences
“At Make-A-Wish North Dakota, we pride ourselves on bringing strength and joy to children and their families in the face of a critical illness diagnosis. We are so humbled and grateful when a wish mom like Erin so graciously and articulately shares back that story of strength and joy. Erin and her daughter Everly were our “mission moment” at the March 2023 Board of Directors meeting where Erin educated the board and staff on Everly’s condition, described her every day medical care, and shared how Erin is a fierce advocate for her daughter. As part of their family’s village, volunteer wish granters, including one of our chapter’s Directors, said that Everly knew what her wish was right away – to meet the princesses at Walt Disney World with her cousin! Erin was effusive with her thanks and declared that everything about the wish experience was magical. We loved hearing that those memories are captured in a photobook which is used for Everly’s doctors’ appointments to help her cope and focus on fun times. The mutual appreciation in that board room was so heartfelt. It was clear Make-A-Wish made an impact on Everly and Erin, but equally as powerful was the impact Erin made that day on our team. Erin is a natural storyteller, and her village is bound to get bigger as more people are welcomed to witness her words.”
Angie Leier, Make-A-Wish Volunteer and Outreach Manager
“It was a pleasure working with Erin on Gus Gear’s Rays of Hope feature. She was eager to share her story to support others in the community, came to the on-camera interview extremely well-prepared, and was a delight to interview. Erin has a remarkable gift for educating others about her daughter’s rare condition, MMIHS. Her work through the MMIHS Foundation clearly shows her heart for this community and her calling to help others. Erin’s advocacy for her daughter and others with MMIHS through the foundation is a powerful story for our community, showing how a life-changing diagnosis can lead you to help others. We hope that by sharing Erin’s story and others like it, we will inspire our community that there is hope in every diagnosis.”
Sarah Palya, Founder & CEO of Gus Gear
Gus Gear Presentatons
Additional Information:
For more information related to my experiences as an advocate for children with medical needs, along with families/caregivers, please visit the “Advocate” drop down tab at the top of the homepage. Thank you!
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