As the summer draws to a close, we prepare for the transition back to school or a return to more structured routines. This time of year can evoke a wide spectrum of emotions for our families, from excitement to anxiety, and everything in between. We stand in solidarity with all our caregivers as we navigate this transition together.
We are excited to share the news of the extension of the research grant awarded to Dr. Randy Strich at Rowan University for his work to further understand the role mitochondrial dysfunction plays in the pathology associated with MED13L, which you can read more about here. Additionally, we continue to work on planning for our July 2025 Family and Research Conference!
We are also grateful to community member and MED13L mom, Sarah Allen, who shares her advocacy journey with her daughter in this special back-to-school edition of our newsletter. Her story is a testament to the strength and resilience within our community.
Thank you for being part of our supportive and inspiring network.
With much gratitude,
The MED13L Foundation Board Members
Research Update
What’s in a Number: MED13L Prevalence - In this article, Director of Research Rachel Heilmann answers the question we all want to know: How many people have MED13L? Discover why it's not as simple as it seems and learn about the complexities involved in understanding the true prevalence of MED13L Syndrome.
We currently have 48 members enrolled in RARE-X. Our next goal is to reach 70 members by the end of September. Interested in enrolling but don't know where to start? Email kbboychuck@med13l.org with any questions.
Emma's journey began when she wasn't hitting her milestones, leading her parents to seek help and therapy to support her development. Despite facing numerous challenges, including a move to a new state and an eventual rare MED13L diagnosis, their advocacy never wavered. Discover how they navigated these hurdles and fought for Emma's needs every step of the way.
Last month, MED13L mom Rebecca Mullen shared her IEP Tips and Tricks. As we head back to school this month, MED13L Mom Sarah Allen breaks down her lived IEP experiences.
August Zoom Events
Our MED13L Support Group is back on August 13th at 7:00 PM ET with a session we can all relate to: From Summer Sun to School and Therapy Runs: Navigating the Transition.
Mark your calendars for our next date September 19th at 7:00 PM ET, Caring for the Caregiver: Because You Can't Pour from an Empty Cup.
Additionally, don’t miss our MED13L Family Connect segment. Meet MED13L Mom, Rochelle, and MED13L Young Adult, Cora. They'll share Cora's journey from a non-verbal child to a speaking (and texting) young adult, and discuss what the future might hold.
If you are interested in either event and have not done so already please email info@med13l.com for the zoom link.
Did You Know?
August 17th is National Non-Profit Day! The MED13L Foundation is proud to have been serving the MED13L community for the past 7 years, and we look forward to serving you for many years to come. Because of you, our steadfast supporters and donors, the MED13L Foundation is making important investments in research, advocating for MED13L awareness, and promoting self-care for families living with MED13L.
Talk to your school or HR department to set a day to dress casually or creatively and ask participants to donate to your cause.
Thank you to our MED13L Volunteers!
You may recognize these faces from our social media. These are our dedicated MED13L volunteers, assisting with everything from social media posts to research. We are incredibly grateful for their help! Do you love someone with MED13L? Reach out today to see how you can get involved!
Join the MED13L Volunteer Team
As our current volunteer team heads back to school, we need more help! Are you a sales or marketing professional willing to share your time and expertise? The MED13L Foundation needs assistance with marketing and fundraising strategy, newsletter management, and social media marketing.
New Educational Resources from Pediatric Epilepsy Surgery Alliance! Power Hours are now available, offering guidance on topics ranging from Back to School with an IEP to Supporting Siblings and Financial Planning. You can find these informative sessions and more educational videos on their YouTube channel. Click below to watch and learn more!
The Foundation has been such a blessing to our family! One of the most beneficial assets was learning about the ICD-10 code and being able to notify all of our daughter’s health care providers when it became effective. We are grateful for the Foundation and wouldn’t want to navigate this journey without it!
