Tubb2a Foundation

🌟 Board Spotlight: Dr. Mohammed Harris, PhD, MBA, MPH, MPA 🌟

We’re honored to introduce Dr. Mohammed Harris, an executive leader in precision medicine, diagnostics innovation, and translational research.
Dr. Harris’s career bridges science, business, and public health, with a deep commitment to health equity and preventive care. 💛

I'm honored to introduce the Founding Board of the TUBB2A Foundation. Six exceptional leaders bringing together expertise across neuroscience, diagnostics, public health, biotechnology, ethics, law, and organizational leadership - working together to accelerate progress for children and families affected by TUBB2A-related disorders.

Each shares a commitment to one mission: accelerating science, connection, and hope for families affected by TUBB2A-related neurodevelopmental disorders. They each bring a unique perspective of decades of expertise to our mission - helping shape the Foundation’s scientific roadmap, ethics and compliance practices, and partnerships worldwide.

💛 Because no family should face rare alone.

💛 We have one seat remaining for a mission-driven leader who brings lived experience or expertise in finance, global nonprofit management, or rare disease fundraising.

If that sounds like you — or someone you know — we’d love to connect.

🌍 International Day of Persons with Disabilities (IDPD)
Celebrating Innovation, Strength, and the Power of Accessible Design

On this Day, we’re celebrating something powerful:
The tools, technologies, and adaptations that unlock independence — not limit it.

For our TUBB2A community, mobility devices, communication tools, visual supports, orthotics, alternative seating, and adaptive tech aren’t signs of weakness.
- They are extensions of possibility.
- They help our kids move, explore, express, participate, and show the world who they are.

Our kids are innovators by nature.
Every day, they adapt, problem-solve, and navigate a world that wasn’t built for them.
Their assistive tools aren’t constraints rather they’re catalysts.
A walker becomes confidence.
A wheelchair becomes speed.
A communication board becomes voice.
A lift harness becomes adventure.
A visual support becomes clarity.
A therapy device becomes strength.
These tools open doors literally and figuratively.

How the TUBB2A Foundation fits in
By supporting research, adaptive technologies, care pathways, and community connection, we’re building a future where every child:
✨ is understood
✨ is supported
✨ can explore their full potential
✨ and has access to the tools that help them thrive

If you feel called to support this mission today, you can contribute here:
🔗 https://lnkd.in/e2jakBUi

To every child and adult living with disabilities:
You are seen.
You are valuable.
You are shaping a better, more inclusive world simply by being here.

And to every caregiver, sibling, teacher, therapist, researcher, and clinician - thank you for being part of the village.
Today, we honor you.
Every day, we walk with you.

This October we're igniting a challenge and it isn’t just about awareness. It’s about community — about showing that no family walks this path alone. Every glowing pumpkin is someone saying, “We see you. We’re with you. And we’re lighting the way forward — together.”

Here’s how to join:
✨ Let’s fill October 24–31 with hope, connection, and glowing pumpkins across the world.
1️⃣ Carve a pumpkin — we have a TUBB2A stencil
2️⃣ Place a candle inside and snap a glowing photo 🕯️
3️⃣ Post your photo on social with the hashtag (& w/me)
4️⃣ Nominate 3 friends to keep the light spreading! 🎃

Carve. Share. Shine. Give hope that glows. With love and solidarity💜

✨ Donate Today! Link: https://www.paypal.com/donate/?hosted_button_id=JFDY83Y7RKMZE

Drop a 🎃 in the comments if you want a stencil!

✨ Rare Sibling Stories: Meet Wes ✨

Behind every child living with TUBB2A, there’s often a sibling who walks the journey right alongside them.

💛 Today I share Weston's story. Wes shows us what it means to be a brother in the rare disease community—offering love, patience, and resilience in moments most kids his age may never face. His bond is a reminder that rare disease impacts the whole family, shaping the lives of siblings in powerful ways.

At the TUBB2A Foundation, we believe sibling voices matter. That’s why we’re grateful to partner with the community, amplifying these powerful stories so the world can see the strength that shines in every family affected by TUBB2A.

🤝 We’re excited to partner in sharing these sibling stories so the world can see the strength that shines in every family affected by TUBB2A.

Watch Wes’ story here: https://www.instagram.com/reel/DMyIsuDPQxa/?utm_source=ig_web_copy_link&igsh=dDBrbWJ3dnV0NzJi

💛 To all the brothers and sisters out there walking this journey—you are not alone, and your story matters.

Meet super sibling, Weston! ⭐️ Weston’s sibling lives with TUBB2A. Listen to Weston share ways to help individuals with rare diseases. You’re awesome, Weston!

🌟 Building Partnerships That Matter 🌟

We are thrilled to announce a new collaboration between the TUBB2A Foundation and the Developmental Disabilities Research Lab at Colorado State University, led by Deborah J. Fidler, PhD, FAAIDD (Professor) and Kaylyn Van Deusen, MS (Lab Coordinator).

Dr. Fidler and Ms. Van Deusen bring deep expertise in neurodevelopmental conditions, early development, and family-centered research. Their partnership with the TUBB2A Foundation strengthens our ability to:

🔹 Better understand the developmental pathways impacted by TUBB2A variants

🔹 Support families with meaningful, evidence-based tools

🔹 Build the scientific foundation necessary to accelerate future treatments

We are honored to partner with such thoughtful leaders in the field, and we look forward to the discoveries this collaboration will make possible—for researchers, for science, and most importantly, for children and families living with TUBB2A. 💛

🌟 With Gratitude to Cooley LLP 🌟

We are honored to share that Cooley LLP, one of the world’s leading law firms, has generously committed to supporting the TUBB2A Foundation on a pro bono basis.

Their team is guiding us through incorporation and tax-exempt status so we can focus on building the tools families and researchers urgently need: patient registries, biobanks, and research models that make treatments possible.

Having Cooley’s expertise behind us means more than just legal support—it is a vote of confidence in the importance of our mission and the families we serve.

To the Cooley team, thank you for standing with us at the very beginning of this journey. Your partnership is helping us lay the foundation for discoveries that will change lives. 💛

💛 We’re Building Something New — And We Need You.

The TUBB2A Foundation is forming its founding board of directors—a small team of compassionate, committed individuals who want to help shape the future of rare disease advocacy, research, and support.

Do you believe in:
🧬 Accelerating answers for families with rare neurogenetic conditions
🌍 Building community where isolation once lived
🤝 Using your lived experience, voice, or skills to create meaningful change

We’re looking for people from all walks of life—caregivers, clinicians, scientists, fundraisers, communicators, educators, advocates—to walk with us.

✨ This is a volunteer board role, remote, and just 5–10 hours per quarter. No prior board experience needed. Just heart, commitment, and a desire to help shape something that matters.

📝 Apply or learn more here:
👉 https://www.linkedin.com/jobs/view/4275441909
📬 Or message us with questions!

Together, we can build a foundation that brings hope to the rarest corners of the world.