How are we wrapping up the second month of 2024 already?! February is always a quick month, even with the extra day this year! The LCC Foundation Board met on February 7th with lots of discussion and ideas that I’m very excited about. I celebrated a Chief’s Super Bowl Win here at the Dike Household!! What a nail biter! Valentine’s Day spent with the ones I love most. On February 21st, I submitted a grant application on behalf of The LCC Foundation. The earliest decision will be announced in August; no later than October. I appreciate all the thoughts, prayers and good vibes as we await that decision. Wrapping up February is Rare Disease Day, on the rarest day of the year, February 29th.
Looking ahead to March, I hope you will consider making a commitment by joining THE LCC ALLIES. For just $10 per month, you will be supporting the natural history of LCC–expanding our understanding of LCC’s manifestations and effects on patients and building out a dataset for future clinical trials.
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!
Join THE LCC by setting up a recurring monthly gift of any amount OR a one-time gift of $150 or more. Once set up, you will be entered to win a customized Simple Modern 40oz Trek cup with handle! It is my favorite cup!
Thank you so much for being here and supporting the efforts of The LCC Foundation! With your help we continue to fund medical research and support LCC patients and their families.
With Love & Hope,
Ashley
Patient Spotlight
Greetings from snowy Nova Scotia!
After a fairly long journey of seizures, tests, medicine and MRl’s, Alice was finally diagnosed when genetic tests confirmed that she had LCC. The cysts and calcification in her white matter cause seizures, affect her vision, coordination and cognitive abilities.
She works very hard at her high school classes and will graduate next year. She loves to listen to music, read books, watch movies and go on walks with her family and dogs. She hopes to go to college or university one day and maybe work with children. She wishes this disease did not exist as it makes simple daily tasks more challenging and she feels exhausted all the time. She hopes that more people will learn about this disease and better treatment or a cure becomes available though research being done to help all those affected by LCC!