February, 2025
Hello Reader,
We’re so excited to invite you to the MED13L Family & Research Meet-up in Waltham, MA, happening July 9th–13th! We are also so excited to announce the meeting is co-hosted with our good friends at CTNNB1 Connect and Cure. Think of it as a mash-up of science, support, and community—where families, researchers, and clinicians come together to learn, connect, and make a difference. Whether you’re sharing stories, swapping ideas, or just soaking it all in, this is one event you won’t want to miss. Let’s make it unforgettable—see you there!
🔹 EARLY BIRD PRICING ENDS APRIL 30TH!
👉 Get Your Tickets Now
👉 Discounted Hotel Rates Available Here
Tentative Schedule: Full Agenda to Follow
Friday, July 11th – Research Day
- Introduction to science, clinical, and clinical trial related concepts in family friendly language for both MED13L and CTNNB1!
- Presentations from top MED13L Researchers and Clinicians
- Updates on ongoing research and scientific advancements
- Research Opportunities
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Saturday, July 12th – Family Day
- Easy to understand summary of genetic-based therapeutics
- Parent Panels to talk about what matters to you
- ‘Ask me anything about Behavior with Cora Taylor!
- Sibling sessions designed specifically for brothers and sisters of individuals with MED13L
- Opportunities to meet new friends from the MED13L and CTNNB1 community
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📌 Research Opportunities: EEGs, blood draws, assessments, and others (Details to follow)
🎉 Kickoff the Family Conference with a Happy Hour on Thursday, July 10th, from 5:30 - 7:30 PM at the Embassy Suites by Hilton Boston Waltham
📌 Friday Night Party at City Point in Waltham – A fun and inclusive event for families to connect and celebrate!
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Accessibility Matters
- Children 10 and under attend for free
- Early bird family registration is capped at $250
- Fundraise $1,000 by May 1st, 2025, and your family’s registration fee will be refunded!
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Employer Matching: Does your employer offer fundraising matching? Let us know!
Community Support: Partner with a local restaurant or franchise for a 20% give-back night to benefit MED13L.
Please consider making a donation Your donation ensures families and researchers can connect, learn, and grow together. Every bit counts—thank you for making a difference!
Remember – Fundraise $1,000 between now and May 1st, 2025 and your registration fee will be waived or refunded!
Questions? Email Katie at kbboychuck@med13l.org. Hope to see you there!
The MED13L Foundation Team
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Show Your Stripes! 🦓 For a limited time only, our conference-exclusive drop is here! Don’t miss out—grab the latest MED13L swag and support groundbreaking research for MED13L Syndrome. Act fast before it’s gone! |
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