S1E4 – Allison Bones at Team4Travis


The Building Blocks For Change

Tragedy is an inevitable part of life, and everyone has a story of heartache to share. Sometimes, tragedy brings people together, providing motivation and hope. However, some experiences, like those involving rare diseases, are incredibly isolating, making it challenging to find community and connection.

Allison Bones faced this exact challenge when her son, who suffered from congenital asplenia, a rare disease where one is born without a spleen, tragically passed away. Her journey is one of building community from personal loss and advocating for change in a world often unaware of such rare conditions.

Inside, you'll discover:

  • Personal Tragedy to Advocacy:
    • Learn how Allison transformed her grief into advocacy for rare diseases after her son Travis, passed away. Understand how personal tragedies can be a powerful driving force for nonprofit work and advocacy.
  • Awareness and Diagnosis of Rare Diseases:
    • Discover the challenges of raising awareness and improving diagnosis for rare diseases like congenital asplenia. We'll discuss strategies for nonprofits to work with medical professionals to enhance diagnosis and treatment.
  • Online to Offline Engagement:
    • Explore Team for Travis's struggle to turn online support into real-world action. Gain insights into effective strategies for converting social media engagement into active participation in events and initiatives.
  • Funding and Resource Allocation:
    • Expanding funding sources beyond family and friends, and how to allocate funds effectively, particularly towards research.
  • Engagement with Government and Policy Advocacy:
    • Understand the importance of engaging with state and federal governments, as demonstrated by the Medicaid coverage bill for genome sequencing, and how nonprofits can influence policy for their causes.

And there's so much more. Please enjoy this conversation with Allison – her website is

About the author 

{"email":"Email address invalid","url":"Website address invalid","required":"Required field missing"}
Subscribe to get the latest updates