A Letter from Our Founder
Hi Ashley,
I hope this message finds you well. As we wrap up another busy and fulfilling month, I wanted to take a moment to share some of the highlights and updates. Your support and dedication have been a constant source of strength for us, and we are deeply grateful for each of you.
This Month’s Activities and Milestones:
Zac’s 16th Birthday: Zac celebrated his 16th birthday with much excitement and joy. We’re grateful for the chance to celebrate such a significant milestone with him. Soon he will have his drivers license!
CP Clinic Follow-Up for Ben: We had a follow-up appointment at the CP clinic for Ben, and the results were encouraging. Outpatient physical therapy for Ben has also resumed, and we’re hopeful that it will continue to make a positive impact.
Ways to Support
Donate! Choose a one-time gift or monthly contribution! Does your Company match gifts? Here’s our tax EIN to check: 88-1908603
Raise Awareness and look great doing it!
Zoom Call with St. Louis Children’s Hospital: I joined a Zoom call with a scientist-physician at St. Louis Children’s Hospital. This connection holds the potential for us to link up with other families affected by LCC/Labrune, and we’re optimistic about the new opportunities this might bring.
Meeting with The United Leukodystrophy Foundation: I had the pleasure of meeting with The United Leukodystrophy Foundation’s patient advocacy groups. They informed me that they will be sharing a table with patient advocacy groups at the National Organization of Rare Diseases Conference in Washington, DC this October. I’m excited about the possibility of connecting with more physicians and similar disease groups there.
Global Leukodystrophy Initiative-Clinical Trial Network Update: My recent meeting with the Global Leukodystrophy Initiative-Clinical Trial Network group provided an update on an upcoming dashboard that will keep us better informed about research initiatives.
Boys Started School: The boys have started school, and they’re adjusting to their new routines really well. We are so happy to be back with our friends!
GeneDx Collaboration: I had the opportunity to share our LCC story with GeneDx, a genetic testing lab. We’re excited that our story will be shared publicly in the coming months. We hope to spread awareness and help other families.
Surprise Dinner from Make-a-Wish: We were pleasantly surprised by our Make-a-Wish friends with a special dinner at Red Robin in Dardenne Prairie. Ben was thrilled with all the surprises and the wonderful evening.
Fundraising/Social Media Intern: I’m in the process of interviewing candidates for a fundraising/social media internship. This role will be crucial in helping us advance our efforts in funding research and raising awareness. If you know anyone who would be interested, send them my way.
Looking ahead, I’m eagerly anticipating the fall weather, football games, and the Global Genes Week in Rare conference in Kansas City, MO next month. Your ongoing support continues to inspire us, and we are excited about the future and the progress we can achieve together.
Thank you once again for your unwavering support and commitment to our cause. We couldn’t do this without you.
With LOVE + HOPE
Patient Spotlight
Chloe-Mae
Hi everyone, my name is Chloe, and I’m 23 years old and from the UK. My journey began with persistent headaches that lasted for months. Despite multiple doctor visits, the symptoms were initially dismissed as just headaches. But things took a turn when I started vomiting, and one night, while lying in bed, I experienced my first seizure.
This led to a series of hospital visits, countless tests, and eventually a trip to Bristol for an MRI. The scan revealed calcifications on my brain, prompting a biopsy in hopes of finding answers. Despite the effort, the mystery remained. A lumbar puncture was performed to relieve the pressure in my head, followed by a second biopsy.
Finally, after a long and challenging journey, I was diagnosed with Labrune syndrome.