2025 Newsletters

2025 June Newsletter

In This Issue:

  • 2025 Family Conference Recap
  • Conference Sponsors
  • Conference Scholarships & Contributors
  • Centers of Excellence
  • Keynote Address: Redefining Normal
  • 2025 Million Dollar Bike Ride
  • PKAN Research Updates
  • BPAN Research Updates
  • Dystonia Management
  • Palliative Care Benefits
  • Bond Beyond Words: Sibling Experience
  • Father's Day Tributes
  • Donor Recognition
  • NBIA Angels
  • Father's Day Tribute
  • Message from the President

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March 2025 Newsletter

2025 March Newsletter

In This Issue:

  • 2025 Family Conference Registration Open
  • CoA-Z Submitted to FDA as Food Additive
  • 2024 Million Dollar Bike Ride Grant Update
  • Board Transitions
  • 2025 Million Dollar Bike Ride Open to Everyone
  • Stanford BPAN Research Begins
  • New Clinic for BPAN and NBIA Disorders
  • Rare Disease Day Celebrations
  • Poppy's Path Gala
  • Family Fundraisers
  • Partners in Hope
  • In Honor & Memory of
  • Message From the President

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Partners

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