I need your help. I need you all to help me blow this thing up. I need this to get in front of the eyes of powerful people and people who have larger audiences than I do. A treatment that has resulted in incredibly amazing results is being withheld by the FDA for manufacturing concerns. Up until yesterday, our community believed the issues were related to the actual drug manufacturing. We were so wrong. Yesterday at a hearing by the Senate Committee On Aging, we learned that the “issues” keeping this treatment from saving our kids were: -Cracks in the floor. -A tarp behind the building. -Post-it notes where they didn’t expect them. Kids are actively losing their ability to walk, talk, eat, recognize their loved ones, insomnia, seizures, etc…because of cracks in the floor. Below is a clip from the senate hearing where Dr. Cara O’Neill gives 3 examples of children with Sanfilippo, including her daughter Eliza. - One child never received any treatment and passed away at 15. - Her own daughter Eliza who received this transformative therapy at an age where she had already begun to regress. Thanks to the treatment the disease has not progressed and she is living an amazing life at 16 years old. - A third child who received the treatment at a much younger age before damage had occurred. This child is in school, reading, writing, playing sports, and learning to ski. Please, share this. Tag your senators. Tag RFK. Tag FDA Commissioner Marty Makary. Tag your Senators. Call them. Email them. Tag your local news stations. Tag national news stations. Tag celebrities. Tag athletes. I will interview with anyone that will let me talk. Tag ANYONE and EVERYONE. We are at a pivotal point for Sanfilippo syndrome and other MPS diseases. We can’t sit by while our kids die a preventable death. I can’t watch Clark die a preventable death because of cracks, tarps, and post-it notes. @US_FDA @DrMakaryFDA @RFKJr_Official @SenatorSlotkin @GovWhitmer @USATODAY @nytimes @ABC @FoxNews @msnbc @CNN @RealDoctorMike @TheRock @TomBrady @JasonKelce @taylorswift13 @mcuban @tkelce @MrBeast