About Dr. Al Freedman: Al Freedman, PhD, is a psychologist, educator, and rare disease advocate with more than two decades of experience working with individuals and families affected by rare diseases and disabilities. Dr. Al is inspired by his personal journey as the father of Jack, who lived with spinal muscular atrophy for 26 years, as well as his professional training and experience as an educator to provide counseling and consultation. He works with families, advocacy organizations, pharmaceutical companies, healthcare organizations, and schools to create meaningful support systems and impactful change within the rare disease and disability communities.

In this episode, Lisa and Dr. Al discuss:

• Intersection of a psychologist’s career, passions, and parenting in rare disease advocacy
• Challenges of navigating uncertainty and building resilience in rare disease communities
• Strategies for supporting families and accommodating invisible illnesses
• The paradox of isolation and connection in rare and misunderstood conditions
• Life lessons from overcoming odds and promoting compassion through lived experience

Key Takeaways: 

• Rare diseases and disabilities introduce constant uncertainty, yet it's within this unpredictability that individuals learn to adapt, drawing strength from shared experiences and building resilience through community connection.
• Supporting families facing rare diseases requires more than medical answers—it demands consistent empathy, thoughtful guidance, and the collective effort to create inclusive systems for invisible illnesses, often anchored in self-advocacy and patience.
• Though invisible conditions often isolate, they simultaneously create deep bonds among those who understand, revealing that solidarity can bloom in the quiet spaces of misunderstood struggles.
• Through Jack’s extraordinary life, we see how embracing limitations while celebrating small victories can inspire others to approach life with perspective, creativity, and inner strength despite overwhelming odds.
• True fulfillment lies not just in overcoming hardship but in sharing the wisdom gained—by spreading compassion, witnessing scientific breakthroughs, and choosing kindness, we leave behind a legacy greater than ourselves.

“And what I learned from my son and what I learned from following his lead and I learned from being his dad, was that I needed to turn my attention to what was possible. The doctors never told us that we would have any good days. They see kids when they're sick. We had to discover that we could have good days, too. And would. We had many more good days than bad days. Never in my wildest imagination could I have imagined back then all that would be possible.”

- Dr. Al Freedman

Connect with Dr. Al Freedman: 

Website: https://www.rarecounseling.com/ 

LinkedIn: https://www.linkedin.com/in/albertfreedman/ 

Connect with Lisa Thee:

Website: https://lisathee.com/ 

LinkedIn: https://www.linkedin.com/in/lisathee/ 

Facebook: https://web.facebook.com/lisa.thee.polvi 

Twitter: https://twitter.com/lisa_thee 

Instagram: https://www.instagram.com/lisatheepolvi/ 

Lisa’s BOOK: Go!: Reboot Your Career in 90 Days 

Show notes by Podcastologist: Angelo Paul Tagama

Audio production by Turnkey Podcast Productions. You're the expert. Your podcast will prove it.