A Letter from Our Founder
Hi Ashley,
I’m thrilled to share some exciting updates on what’s been happening this past month at The LCC Foundation!
In September, we kicked off our Hours for Hope: 65 Hour Movement Challenge, for Leukodystrophy Awareness month, and I’m so proud to announce that we surpassed our fundraising goal of $6,500! We had 36 enthusiastic participants, each of whom helped make this challenge a huge success. Your dedication and support mean the world to us, and the funds raised will significantly impact our efforts to support research for the LCC community.
On a personal note, we had some special family milestones this month. Zac got his driver’s license, a big achievement that we’re all celebrating! We also celebrated Eli’s 14th birthday, which was a joyful reminder of how far we’ve come on our journey together.
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In addition, I had the privilege of attending the Global Genes-Week in Rare Conference, where I had the opportunity to network with professionals in the rare disease space. It was inspiring to connect with others who are equally passionate about making a difference in the rare disease community. I’ve left feeling motivated to continue this great work.
This month, I also had the honor of meeting with the Executive Director of the United Leukodystrophy Foundation to discuss The LCC Foundation’s participation in their 2025 conference. It’s an incredible opportunity to collaborate and contribute to a broader effort to raise awareness and share insights with the leukodystrophy community.
Finally, we had the privilege of sharing our LCC journey with a group of second-year medical students at Ross University in Barbados. It was a valuable chance to educate and inspire future medical professionals about LCC and the challenges our community faces.
Thank you all for your unwavering support and generosity. Together, we’re making a real difference, and I look forward to what we’ll achieve in the coming months!
With Love + Hope,
Patient Spotlight
Thomas
Thomas was a beautiful boy, whose smile would light up a room and his whole body would shake when he laughed. He brought so much joy into our lives and when he passed away his brother said it felt like the world was now in black and white, as the colour had drained away.
Life with Thomas was a rollercoaster. We first realised something wasn’t quite right as Thomas was blind, despite his eyes being healthy. At 4 months he developed infantile spasms, a type of epilepsy which is difficult to treat.