Events

• Friday, July 11th – Research Day
  Featuring presentations from current MED13L researchers and updates on ongoing projects.
• Saturday, July 12th – Family Day
  A chance to review scientific and research insights in an accessible way, followed by family-focused experiences, including:
  • Workshops with parents of similarly aged children
  • Participating in an ‘Ask a Pharmacist’ session
  • Helping the MED13L Foundation identify what matters most to families
  • Opportunity for siblings to participate in a session tailored just for them

Additional Events:

• Research Opportunity: Wednesday, July 9th – Sunday July 13th
  (For those interested, details and timing to follow.)
• Family Conference Kick-off: Thursday, July 10th
  Evening reception from 5:30 PM to 7:30 PM at the atrium lobby of the Embassy Suites by Hilton Boston Waltham.

This special two-day conference will bring together individuals with MED13L syndrome, their families, researchers, and healthcare professionals to discuss the latest advancements, research, and community support.

We offer free admission for children aged 10 and under, and early bird family registration fees are capped at $250 to ensure that families can attend and engage without financial barriers. Plus, if you fundraise $1,000 by May 1, 2025, and notify us, we will refund your family’s registration fee. Hosting an event of this scale requires significant resources, and we need your support to make it a success.

Your registration fee for the MED13L Family & Research Meet-up goes beyond just event access—it’s an investment in a meaningful and impactful experience for our community. This fee helps cover:

• Meals, including breakfast, lunch, and dinner on Friday, as well as breakfast and lunch on Saturday.
• An exclusive conference t-shirt to make our community photo truly stand out and spread awareness!
• Facility costs, ensuring a comfortable and accessible venue for all attendees.
• A special Friday night party at City Point in Waltham, offering a fun and inclusive opportunity for families to connect and bond.
• Research support, with a significant portion—$15,000—allocated to issuing travel grants for top MED13L researchers to attend the event, facilitating biospecimen collection and shipment to our biorepository, and advancing critical research efforts to better understand and treat MED13L syndrome

If you’re able, we kindly invite you to consider making a donation to further support the event. Your contribution will help offset costs and ensure we can continue offering enriching experiences for all attendees while advancing our shared mission to further MED13L research and community support.

Every donation, big or small, makes a difference in helping us create an impactful and memorable event for families, researchers, and healthcare professionals alike.

Remember, if you fundraise $1,000 by May 1st and let us know, we will waive and return your registration fee.

We are deeply grateful for your generosity and commitment—together, we are making a difference!

By purchasing a ticket you are agreeing to this RELEASE OF LIABILITY.