World MED13L Month is the perfect time to highlight the importance of the word community. The MED13L Foundation aims to host a Family and Research Meetup in 2025, and we need your support to make it a reality. Our goals hinge on the power of a strong and inclusive community that encompasses not only families affected by MED13L but also those who share our vision. Friends, families, and acquaintances of MED13L families are familiar with their everyday challenges and the urgent need for effective therapies and solutions. We call on extended family members, friends, neighbors, colleagues, schools, and local businesses who desire positive change to join forces with our patient advocacy group. Together, we can provide support and push forward in our quest to find a cure for MED13L.

With much gratitude,

The MED13L Foundation

"Even though we were worried going into this, we had to try and put the effort in. The MED13L community is such a small group compared to the rest of the medical world. There are only so many of us. We cannot sit back and rely on others to do the work for us. It is up to all of us to do the hard work for our children and future MED13L families. It cannot just be a few participants if we want to get the full answers." Isabelle Wiemero, MED13L Mom

Last year, when the MED13L group arranged a meet-up and biorepository collection in Philadelphia, we knew we had to find a way to go, even though it required a plane ride and significant travel.

Like many others, it took us years to get a formal diagnosis for our son, Owen. Those years of searching for answers were incredibly isolating at times. When we finally found our community in the MED13L Foundation, it was a game changer.

Talking with other parents and caregivers on Facebook and bouncing ideas and questions off each other is great, but we had really been wanting to meet other kids like Owen, who has MED13L, and their parents. After many years of Owen’s life without knowing another person like him, being in a safe group environment surrounded by other children with the same diagnosis was an indescribable experience. Witnessing all our children’s similarities and what makes each of them unique was amazing. Spending time with other MED13L families was so rejuvenating. We also participated in the biorepository collection while there. Continued..

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To understand why we care about our community so much, it is important to remind ourselves how every day in the life of a MED13L community member is impacted.

The Impact MED13L Has On Day-to-Day Life

Commonly Reported Medical Complications/Symptoms Reported By MED13L Families:

· Unable to speak/communicate wants and needs

· Difficulty with toilet training (many wear diapers into teen years and beyond)

· Unable to swallow (fed through a g-tube)

· Fatigues extremely easy – some are reliant on assistive devices due to poor endurance like wheelchairs due to low muscle tone (hypotonia) or cardiac abnormalities

· Most moderately to severely affected individuals’ skills are developmentally at half their age or younger

· Seizures

· Severe attention issues

· Self-injurious behavior/aggression

· Requires specialized schooling/programs

· Anxiety

· Sensory issues

· Constant therapies

· Social isolation for child and family

Fundraising Goals For 2024-2025

You've been asking and we've been listening. We are thrilled to announce our fundraising efforts for May will go toward a 2025 Research and Family Conference. Organizing such conferences comes with substantial costs, and to bring this vision to life, we need YOUR participation.

Follow us on our social media platforms to discover ways you can contribute to raising awareness and funds this May and to honor World MED13L Day!

GET YOUR GEAR

DONATE

What are We Fundraising For?

Watch our Director of Fundraising, Ashley Mort, explain why this Fundraiser is one of our most important ones to date!

Click Here to Watch Ashley Mort's Video

Ways to Celebrate MED13L Awareness Month

Let’s unite and make a bigger impact for MED13L awareness together. Your participation means the world to those we’re fighting for.

Click Here to update your social media with our MED13L Awareness frame.
Start a Facebook or Instagram Fundraiser! Interested in having your own MED13L charity page? Reach out to info@med13l.org to have one made for you.
Ready to show us your tags? #ShowUsYourTags - Social Media Challenge. This month we are bringing back a beloved MED13L tradition with a twist! Remember the Ice Bucket Challenge? This May, the MED13L Foundation revives the spirit of challenge for a cause close to our hearts. We’re proud to announce the annual #ShowUsYourTags Challenge! Show us you love someone with MED13L inside and out for MED13L Syndrome awareness.
#BeCounted by signing up for RARE-X! Scroll down for the link. Questions? email info@med13l.org

Happy Mother’s Day

Happy Mother's Day to all the amazing MED13L mothers, grandmothers, and mother figures in our community! Don't forget to check out our special Mother's Day collection on Bonfire.

Click Here For the Mother's Day Collection on Bonfire

YOUR FOUNDATION IN ACTION:

Fundraising Events:

May 13, 2024

The MED13L Foundation is raising money to support the 2025 Family and Research Conference. Please consider supporting our fundraising efforts by making a donation and/or supporting our apparel sale. Did you know you can set up an automatic monthly donation? This is an easy way to show your support and help get us to our goals.

Upcoming Events:

May 13, 2024 - World MED13L Day

World MED13L Day is May 13th but we expanded the celebration for the entire month of May!!! How are you celebrating? Please share your activities on social media pages and tag The MED13L Foundation.