Hello Reader,
As we turn the page to May, our focus sharpens on something that unites and drives our entire community forward: awareness. May is World MED13L Awareness Month, and on May 13th, we recognize MED13L Day: a powerful moment to elevate our voices, share our stories, and expand the reach of this community in meaningful ways.
Awareness is not just about visibility; it is what fuels research, strengthens advocacy, and brings new families into a network of understanding and support. Every conversation you start, every post you share, and every connection you make helps ensure that MED13L is seen, heard, and better understood.
This month, I encourage each of you to take action in a way that feels right for you. Start a fundraiser, organize a small community event, or simply share your family’s journey. If you are looking for an easy way to participate, visit our merch shop! Wearing MED13L gear is a simple but powerful way to spark conversations and show solidarity wherever you go.
Advocacy is just as important. Whether you are educating a teacher, speaking with a healthcare provider, or reaching out to your broader community, your voice has impact. Change happens when awareness turns into understanding, and understanding turns into action.
There is no single way to make a difference this May, but together, our collective efforts create momentum that cannot be ignored. Let’s use this month, and especially May 13th, to show the strength, resilience, and unity of the MED13L community.
With gratitude,
Make an Impact This May: Start Your MED13L Fundraiser!
May is MED13L Awareness Month, a time to come together, raise our voices, and support the families and research efforts that matter most. One of the most powerful ways you can help is by creating your own fundraiser.
Getting started is simple, and your impact can be huge.
Start Your Fundraiser in 3 Easy Steps:
1. Create Your Page
2. Share Your Story
3. Spread the Word
Need inspiration? Try these fundraising ideas: Birthday campaigns, walk/run challenges, lemonade stands, school or scout projects, workplace giving, social media challenges, or community events.
Every dollar raised helps fund critical research, grow awareness, and support families impacted by MED13L. Start your fundraiser today and be a part of something meaningful this May.
Need assistance? Message Stephanie Khio (skhio@med13l.org).
Wear Your Awareness this May!
Show your support in style and be sure to tag us in your new wear. 100% of the proceeds go to funding research and hope powered by The MED13L Foundation.
Be a part of the change and help spread awareness this month!
🚴 Ride for Rare — June 13, 2026
Join us for the Million Dollar Bike Ride on Saturday, June 13, 2026, and help turn every mile into meaningful progress for rare disease research.
This event is a powerful opportunity to raise awareness, build community, and support research for MED13L and other rare diseases.
Interested in creating a team? All rare disease communities are welcome to participate and make an impact.
Can’t attend, but still want to participate? There’s a virtual option to ride, too!
👉 Register or start your team today: www.milliondollarbikeride.org
(A casual family meetup is in the works for Friday, June 12, 2026. Please email Vanessa Dias at vdias@med13l.org if you are interested in joining.)
Calling MED13L Families – Share Your Story on The Voices of MED13L 🎙️
We are inviting members of the MED13L community to join us as guests on The Voices of MED13L Podcast. This podcast is a space to share real journeys, celebrate progress, and connect families through lived experience.
If you are interested in participating, please email vdias@med13l.org with the following information:
- Your name
- Your child’s name, gender, and age
- Your time zone
Participants should plan for a casual, one-hour interview. The conversation will be informal and focused on hearing your family’s journey and where your child is at this stage in their life.
We are also building a list of families interested in sibling interviews for a special Sibling Takeover episode scheduled for Wednesday, June 3 at 8:00 PM EST. If your child’s sibling may be interested in participating this summer, please note that in your email as well.
Thank you for helping us amplify the voices of our community. We look forward to hearing from you!
💙 Together, we make every MED13L story count.
In Case You Missed It:
