Podcast Summary: Living Well with Multiple Sclerosis

Episode: S8E6 – "Parenthood and Advocacy with MS" with Julie Stamm
Date: February 25, 2026
Host: Geoff Allix
Guest: Julie Stamm – Author, Advocate, MS Parent

Overview

This episode centers on parenthood and advocacy in the context of living with multiple sclerosis (MS), highlighting the experiences and insights of Julie Stamm. Julie, an MS advocate and children's book author, shares her personal journey with MS, the importance of transparency with kids, the role of family and community, and how advocacy work can both empower and support individuals and families touched by MS. She offers encouragement, practical wisdom, and hope for those newly diagnosed and beyond—especially for parents.

Key Discussion Points & Insights

Julie Stamm’s MS Journey and Move into Advocacy

• Diagnosis Timeline: Julie began experiencing MS symptoms in 2001 and was diagnosed officially in 2007—she speaks candidly about the lengthy and “frustrating” diagnostic process.

  “It took a really long time to get diagnosed, which was frustrating. But I decided to turn my diagnosis into advocacy...” [01:16 – Julie Stamm]

• Shift in Focus: After her son was born, Julie’s advocacy expanded to supporting parents with MS and their kids, fostering openness and inclusivity.

Transparency with Children about MS

• Julie emphasizes the importance of being age-appropriately open with children about MS, advocating for honesty and dialogue, but with sensitivity to developmental levels:

  “We’re not going to talk about demyelination... We’re going to focus on where we are now, that there’s an abundance of love and our days might not look the same as everyone else’s, but they’re going to be extraordinary adventures.” [01:53 – Julie Stamm]

The Children’s Book "Some Days" and Parental Guilt

• Julie’s picture book "Some Days" is rooted in her son’s viewpoint, highlighting how differently children can perceive parental struggles. She recounts writing letters about her perceived “failures” as a mom, only to have her son remember those moments positively:

  “Even those moments that I feel like I’m failing, he doesn’t see them that way... give yourself a little bit of grace.” [03:55 – Julie Stamm]

• She notes all parents carry guilt, and for those with a chronic illness, it’s compounded—yet children’s perspectives are often far more forgiving.

The Family Dynamic and Empathy

• Julie stresses that MS affects not just the individual, but the whole family, requiring adaptation and resilience:

  “A lot of times, you know, I have MS, but my family does too, in a way, because they have to live with my limitations.” [05:14 – Julie Stamm]

• She’s proud of the empathy, adaptability, and inclusivity her son demonstrates—traits strengthened by their shared experiences.

Adapting to Change & Acceptance

• Changes in ability prompt decisions like considering a more accessible home. Julie talks about giving herself permission to adapt (e.g., considering walking aids) and embracing change with grace:

  “I see the changes, and I think it's really important to, like, notice those subtle changes... but we do it and we do it with grace and that's what's important.” [06:12 – Julie Stamm]

Pathways to Advocacy

• Julie recommends connecting with local MS societies as a starting point for advocacy. She stresses that every voice and perspective is valuable, and that people should find their “platform” and niche within the community (e.g., parenting, pediatric MS, newly diagnosed):

  “There’s enough room at the table for all of us—it’s not a competition.” [07:16 – Julie Stamm]

Inclusivity Projects: The "Essential Inclusion Skills" Deck

• Julie co-created a deck of cards with Jenny Woo to engage children and adults in conversations on inclusion and diverse abilities. Each card features a QR code linking to an individual’s story, fostering understanding and pride:

  “Each card… links you to an individual's specific story... I learned so much from this project.” [09:08 – Julie Stamm]

Maintaining Positivity & the Gratitude Practice

• Julie recognizes the real challenges of MS, including grief at each new loss of function, but attributes her long-term resilience to maintaining hope and practicing gratitude:

  “You can get stuck in a sad and depressed headspace... but it doesn’t serve a purpose. We can’t really predict where the world is going to go... each loss I have to allow myself time to grieve.” [10:44 – Julie Stamm]

The Importance of Community & Support Groups

• Julie discusses the value of MS-specific communities, where members can be unfiltered and honest, offering practical and emotional support:

  “The best thing about MS [support groups] is… you skip the small talk. We just go straight to here’s how our day is... Let’s celebrate the joys, but let’s also honor the sadness.” [12:28 – Julie Stamm]

• She highlights her virtual support community Voices of MS—open, international, and focused on lived experience.

"No one gets it unless you've got it"

• The importance of connecting with others who truly understand MS, beyond even medical professionals or family, is underscored:

  “No one gets it unless you've got it. Even your neurologist or your partner. But if you say to someone with MS, like, ‘Oh, my fatigue’s really bad today,’ they know what you mean immediately.” [13:33 – Geoff Allix]

Advice for the Newly Diagnosed & Hope for the Future

• Julie offers a message of hope, emphasizing advances in research and treatment, the evolving nature of MS, and the power of intentional parenthood:

  “There’s so many great strides we’re making. ...[MS] is a lot less bleak than it used to be.” [14:28 – Julie Stamm] "If you want to be a parent, don’t let this disease stop you. You're still going to be an epic, phenomenal parent... This disease might slow it or change the dynamic of it, but it will not stop it. So keep at it." [00:00 & 15:16 – Julie Stamm]

Notable Quotes & Memorable Moments

• On Transparency with Kids:

  “I think not being transparent with our kids is kind of a disservice…” [01:53 – Julie Stamm]

• On Self-Compassion as a Parent:

  “Give yourself a little bit of grace.” [03:55 – Julie Stamm]

• On Family Empathy:

  “My son is the most empathetic and kind kid... those are qualities that are more important than running around a zoo for too long that I can’t handle...” [05:14 – Julie Stamm]

• On Adaptation:

  “Even buying a house that has stairs, you know, four years ago didn’t look the way it looks now... but we do it and we do it with grace...” [06:12 – Julie Stamm]

• On Advocacy:

  “There’s room for every voice.” [07:16 – Julie Stamm]

• On MS Community:

  “We skip the small talk and I love that. ...Let’s celebrate the joys, but let’s also honor the sadness.” [12:28 – Julie Stamm]

• On Hope for New Patients:

  “You’re gonna be fine. ...If you want to be a parent, don’t let this disease stop you.” [15:16 – Julie Stamm]

Timestamps for Important Segments

• [01:16] – Julie shares her diagnosis journey and advocacy origins
• [01:53] – Transparency in parenting with MS, using her children’s book as a tool
• [03:55] – How children perceive chronic illness, and advice on parental guilt
• [05:14] – The wider family impact and building empathy/resilience in children
• [06:12] – Accepting the need for physical aids and adapting the home environment
• [07:16] – How to get involved in advocacy and finding your niche
• [09:08] – Co-creating the Essential Inclusion Skills deck and promoting inclusion
• [10:44] – Positivity, processing grief, and the role of gratitude
• [12:28] – The importance of MS support communities and emotional honesty
• [13:33] – Understanding the unique challenges of MS within peer groups
• [14:28, 15:16] – Advice for the newly diagnosed; optimism for the future and parenthood

Final Takeaways

• Open, honest conversations with children about MS foster resilience and empathy—in both parent and child.
• Advocacy is accessible to everyone—start local, find your voice, and know your story has value.
• Family adapts together; challenges bring deeper understanding and connection.
• No one should face MS alone. Community (especially virtual) is a vital resource for solidarity, advice, and shared experience.
• Research advances offer hope: MS is not what it was a generation ago, and there are abundant paths to living—and parenting—well.
• Give yourself grace. Celebrate your wins. Never give up on what matters to you.

Further Resources

• Voices of MS (Julie’s virtual support group)
• Essential Inclusion Skills Card Deck
• Julie Stamm’s book “Some Days”
• Overcoming MS community and newsletter

Links and bonus info available in show notes at overcomingms.org/podcast