Cure LBSL

What if one game of tennis could help change someone's life?

Hit for Hope is our first-ever tennis and pickleball fundraiser, and spots are going fast! Join us Sept. 27 in Northern Virginia for a day of competition and community that makes a real impact for people living with LBSL, an ultra-rare and devastating brain disease.

🎾 2-person tennis or pickleball teams
🎾 Adult beginner pickleball clinic
🎾 Youth tennis clinic (almost sold out!)
🎾 Spectators welcome

Every ticket funds critical research! Register today: Givebutter.com/hit-for-hope

🧬 SPOTTED AT ASGCT 🧬

Dr. Christina Nemeth Mertz of Kennedy Krieger Institute spoke at the American Society of Gene and Cell Therapy's Annual Meeting earlier this week in Boston on the DARS2-AAV9 gene therapy in development.

💚 We're so grateful for all the work she and the whole research team are doing — and we love seeing her take the stage to discuss their progress in front of so many brilliant minds from around the world!

This Mother’s Day, we want to shout out to the rare disease moms.

To the ones who sought answers and then had to endure the pain of hearing the diagnosis.

To the ones who became self-taught geneticists and rare disease experts through countless late nights of research.

To the ones whose Google search history would make their doctors both impressed and mildly concerned.

To the ones who advocate tirelessly, even at the risk of being “that mom.”

To the ones who spend so many hours on hold with their insurance companies, they have memorized the hold music.

To the ones who drive to so many doctor appointments that their car tires see more action than an Uber driver’s.

To the ones who carry the weight of the unknown but march on in hope.

To the ones who smile and nod when some well-meaning person starts a sentence with “Have you tried…”

To the ones whose hearts break each time the latest sign of disease progression emerges.

To the ones who smile and shrug when the world says, “We just don’t know how you do it!” because you don’t know, either, to be honest.

To the ones who mastered saying the tongue-twisting name of their or their child’s rare disease 10 times fast.

To the ones who hold it together when everyone around them is falling apart.

To the ones who sometimes really need a break, but power through anyway.

To the ones who found their tribe in a rare disease community they never imagined they would join.

To the ones whose family and friends and neighbors (and strangers!) rally around them and support their mission to find a cure.

Happy Mother’s Day, rare disease moms. You are incredible, and incredibly cherished.