Thanks to our supporters, the Laney Jaymes Foundation Too Too Fun Tutu Run was a huge success despite the rain! It started out at the waterfront with lots of umbrellas and evolved into a warm, dry bowl-a-thon, with a raffle and awards!
The co-Founder of LJF, Brian Fitzsimons, gave a short speech to the brave, slightly soaked crowd. He thanked the crowd for their support, and for their willingness to come out in the rain to honor Laney, and help spread the word about pediatric stroke. Brian asked supporters to wear their LJF t-shirts often and proudly, and reminded that an immediate stroke diagnosis can change a child’s life.
Brian updated the crowd that over $15,000 was raised at to the LJF Memorial Golf Tournament, and that significant money was raised for the Tutu Fun Tutu Run, $3,300! He then gave the crowd an update regarding the Foundation’s current initiatives:
- The Foundation has provided substantial monetary support to the International Alliance for Pediatric Stroke (“IAPS”). IAPS has attended and hosted conferences nationwide, sharing Laney’s story with the medical community and emergency medical personnel. IAPS works tirelessly for pediatric stroke recognition among policy makers, seeking improved training and procedures.
- The Foundation’s Adaptive Equipment Grant is live! The Foundation has worked with Kennedy Krieger and therapists across the country to offer an adaptive equipment grant to children disabled by stroke. The Foundation is eager to approve its first grant application. Stay tuned!
- The Foundation will be providing a research grant to Johns Hopkins Medical Center (“JHMC”) to perform data collection, statistical analysis, and medical publication on the topic of pediatric vasculopathy. JHMC, in collaboration with Boston Children’s Hospital and the Children’s Hospital of Philadelphia, will analyze data from thousands of patients with abnormal vasculopathy in order to better understand Laney’s disease, and Moyamoya disease generally.
- Brian is co-authoring an article with Dr. Lisa Sun, a neurologist at JHMC, regarding Laney’s story and misdiagnoses. Brian and Lisa hope to publish the article in Pediatrics, a peer-reviewed medical journal.
- The Foundation is preparing to have a Maryland bill introduced that would require certain training and education regarding pediatric stroke for caretakers and medical personnel.
Brian thanked Kim Osborn and Laura Fitzsimons for organizing the Too Too Fun Tutu Run and Bowl-a-thon. Despite the rainy weather, the event was a tremendous success.