An interview with Julie A. Stamm: Creating a more inclusive world through advocacy, awareness, and education on Multiple Sclerosis on June 5, 2024.
Biography/Background
Julie A. Stamm was diagnosed with Multiple Sclerosis (MS) in 2007. Following her diagnosis, Julie made it her mission to educate, advocate, and support others battling chronic illnesses. She works tirelessly to help lessen the burden each patient has to bear. Her efforts have given her the opportunity to work with physicians, patients, and foundations across the Globe.
After the birth of her son in 2016, Julie shifted her focus to supporting the children of parents with a chronic illness. Her children’s book entitled “Some Days: A tale of love, ice cream, and my mom’s chronic illness” was created to normalize differing abilities and amplify how each of us can thrive in spite of the challenges. In 2023, Julie co-created ‘52 Essential Inclusion Skills – An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities’ with Mind Brain Parenting’s, Dr. Jenny Woo. The movement Julie has created has changed the apologetic tone and transformed the child and parent’s experiences into uplifting stories that highlight the patient’s resilience. Julie is committed to representing the underrepresented. Through her work, she has brought awareness and understanding to some of the many diverse abilities that can impact all of our lives, either directly or indirectly.
What is your passion and how did you get involved in Multiple Sclerosis awareness and hope for a cure?
My goal is simple: to create a world in which everyone, regardless of ability, is treated with respect and kindness. When I wrote my first book, I realized there was a hole in the market; although I didn’t fully grasp how significant that void would prove to be. Within months of the book’s release, it quickly became apparent that parents were desperate to find resources to help facilitate difficult conversations about chronic illnesses with their children. I have received countless messages of gratitude from parents who finally feel seen and represented. While my approach may be lighthearted, my intention is not to make light of chronic illness. My goal is to make the burden of a chronic illness lighter for children. I will never negate how difficult it is to live with and manage a chronic illness; after all, I do battle one daily. What I hope to do is offer support and age-appropriate transparency to the children of parents (or anyone in their life) that have their own battle to fight. Our children don’t see our adjustments as burdens, but rather as days filled with love. Our children have questions, and it is my hope that through my work, I will help open doors of discussion.
What type of goals do individuals with Multiple Sclerosis have when working with you?
My mission is to provide hope and support.
What effect can it have on an individual with Parkinson’s?
Every single person can benefit from becoming an advocate, whether it be for yourself, your family, your community. Offering support is essential to create an inclusive world.
What would you like to see as a future goal for your programs?
I hope that in the future there will be no need for my work. I hope the future generation is equipped with the tools to be kinder, more empathetic, and caring humans.
What events do you participate in?
AAN
CMSC
MS Walk
Bike MS
Innumerable advisory panels
How does this also assist the caregivers?
Offering support to caregivers is essential. On top of having MS, I am also a primary caregiver for my mother with FTD. I am astonished how few resources are out there. I am determined to change that.
How can someone get in touch? What is your website?
Instagram: iamstamm
In your opinion, what is the key to effective advocacy?
Define what you want to achieve. Clear, specific, and measurable goals provide direction and a benchmark for success.
Know who you need to persuade and tailor your message to their values, interests, and concerns. Different audiences require different approaches.
Base your advocacy on solid evidence and reliable data. This adds credibility to your arguments and helps counter opposition.
Personal stories and anecdotes can humanize issues and make them more relatable. Stories can evoke emotions and make a lasting impact.
Collaborate with like-minded organizations, influencers, and stakeholders. A united front amplifies your message and increases impact.
How can we better fundraise to support a cure for Multiple Sclerosis?
- Leverage Social Media and Online Platforms
- Host Fundraising Events
- Corporate Partnerships and Sponsorships
- Engage the Community
- Grants and Foundations
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Spending time with my son is by far the greatest alternative remedy. He is my joy and reason to fight.
Why should people who don’t have Multiple Sclerosis care about this?
1 in 4 adults (26%) in the US has some type of disability (CDC, 2023). Of the world’s population, roughly 16% live with a significant disability (1.3 billion people), or 1 in 6 of us (World Health Organization, 2023). We need to represent this underserved and, all too often, unseen audience. It is up to us to make them seen. It is up to us to have conversations that facilitate inclusivity and kindness.
My goal is to create a world in which everyone, regardless of ability, is represented and treated with respect and kindness.
Have you had any family members or relatives affected by Multiple Sclerosis?
My sister and father also have MS.
If you had one song that would tell us more about you or represent your life, which song would it be?
Beautiful Things by Benson Boone
I think of it and how the disease keeps taking and my hope for it not to.
If you had one final statement or quote you could leave for the Multiple Sclerosis community, what would it be?
‘On with the dance, let joy be unconfined’ – Twain
Losing abilities is hard. I constantly need to remind myself that life is beautiful, even if it isn’t how you pictured it would be.