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Brutus Stark

@iron_brutus • 5,351 subscribers

Father. Husband. OSU Football. Fitness 🏈 🏆🏋️Cure Sanfilippo

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This may seem so simple to most, but this is a huge win for us! Due to the cognitive delays caused by Sanfilippo, coordination is greatly impacted and makes tasks most of us take for granted, difficult. Clark pretty much exclusively has to drink with a straw but yesterday he went and grabbed his “big boy cup” and went to town! Got a little on his shirt but overall he did great! These small tasks are such huge wins for us and continue to give us hope for his future and all kids with sanfilippo.

This may seem so simple to most, but this is a huge win for us! Due to the cognitive delays caused by Sanfilippo, coordination is greatly impacted and makes tasks most of us take for granted, difficult. Clark pretty much exclusively has to drink with a straw but yesterday he went and grabbed his “big boy cup” and went to town! Got a little on his shirt but overall he did great! These small tasks are such huge wins for us and continue to give us hope for his future and all kids with sanfilippo.

56,235 görüntüleme

💜 One Last Update! 💜 Last week when we were in Minnesota for Clark’s 6-month follow-up for his clinical trial, of all the tests they ran, the one we were both most anxious and most eager to see results from was his brain MRI. For children with untreated Sanfilippo Type A, it’s typical to see 2–5% loss of brain volume each year, along with enlargement of the ventricles (the fluid-filled spaces in the brain). This is one of the most heartbreaking parts of the disease — watching the brain slowly lose tissue and function over time. We were so nervous that Clark’s MRI might show some loss compared to his baseline scan 6 months ago. But the results came back and… ✨ ZERO change. ✨ His brain volume and ventricle size were completely stable — no loss at all. This is such an incredible sign that the treatment may be doing exactly what it’s meant to: clearing the toxic waste from his brain cells and protecting his brain from further damage. If feel that it is SO important for us to share these results as they come because people need to be FULLY aware that these treatments that are out there WORK. These children with Sanfilippo do not need to regress and they DEFINITELY do not have to have their lives cut short. We just need the FDA to say yes. We are so close to a reality where Sanfilippo syndrome is as manageable as a disease like diabetes. P.S. Enjoy this video of our little sunshine having the best time singing!

💜 One Last Update! 💜 Last week when we were in Minnesota for Clark’s 6-month follow-up for his clinical trial, of all the tests they ran, the one we were both most anxious and most eager to see results from was his brain MRI. For children with untreated Sanfilippo Type A, it’s typical to see 2–5% loss of brain volume each year, along with enlargement of the ventricles (the fluid-filled spaces in the brain). This is one of the most heartbreaking parts of the disease — watching the brain slowly lose tissue and function over time. We were so nervous that Clark’s MRI might show some loss compared to his baseline scan 6 months ago. But the results came back and… ✨ ZERO change. ✨ His brain volume and ventricle size were completely stable — no loss at all. This is such an incredible sign that the treatment may be doing exactly what it’s meant to: clearing the toxic waste from his brain cells and protecting his brain from further damage. If feel that it is SO important for us to share these results as they come because people need to be FULLY aware that these treatments that are out there WORK. These children with Sanfilippo do not need to regress and they DEFINITELY do not have to have their lives cut short. We just need the FDA to say yes. We are so close to a reality where Sanfilippo syndrome is as manageable as a disease like diabetes. P.S. Enjoy this video of our little sunshine having the best time singing!

48,084 görüntüleme

I hope I never have to miss him or his laughter 💔 U.S. FDA please move urgently and approve UX111 and help save his life before it’s too late.

I hope I never have to miss him or his laughter 💔 U.S. FDA please move urgently and approve UX111 and help save his life before it’s too late.

22,981 görüntüleme

Been a while since I’ve given an update! Sanfilippo syndrome causes a buildup of waste in the body that doesn’t just affect the brain — it also builds up in the joints, making them stiff and painful over time. Another prominent symptom of MPS disorders (Sanfilippo is MPS 3) is large bellies caused by waste buildup in the liver. Six months ago, Clark could barely touch his feet because of his big belly and stiff hips. Something as simple as taking off his shoes was a struggle. But this boy has been working SO hard in physical therapy and since he began the clinical trial treatments to get rid of the waste his belly has gotten smaller! Now he can take his shoes off all by himself! 🙌💪 We are so proud of him pushing through these challenges and making progress!

Been a while since I’ve given an update! Sanfilippo syndrome causes a buildup of waste in the body that doesn’t just affect the brain — it also builds up in the joints, making them stiff and painful over time. Another prominent symptom of MPS disorders (Sanfilippo is MPS 3) is large bellies caused by waste buildup in the liver. Six months ago, Clark could barely touch his feet because of his big belly and stiff hips. Something as simple as taking off his shoes was a struggle. But this boy has been working SO hard in physical therapy and since he began the clinical trial treatments to get rid of the waste his belly has gotten smaller! Now he can take his shoes off all by himself! 🙌💪 We are so proud of him pushing through these challenges and making progress!

29,933 görüntüleme

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Thank you so much Quinshon Judkins and Momma "T" for the awesome ornament! Clark loved it!! 😊

Thank you so much Quinshon Judkins and Momma "T" for the awesome ornament! Clark loved it!! 😊

245,682 görüntüleme • 1 yıl önce

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. U.S. FDA Dr. Marty Makary F C Sen. Elissa Slotkin Governor Gretchen Whitmer USA TODAY The New York Times ABC News Fox News MSNBC CNN Dr. Mike Varshavski Dwayne Johnson Tom Brady Jason Kelce Taylor Swift Mark Cuban Travis Kelce MrBeast

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. U.S. FDA Dr. Marty Makary F C Sen. Elissa Slotkin Governor Gretchen Whitmer USA TODAY The New York Times ABC News Fox News MSNBC CNN Dr. Mike Varshavski Dwayne Johnson Tom Brady Jason Kelce Taylor Swift Mark Cuban Travis Kelce MrBeast

32,364 görüntüleme • 3 ay önce

A little video courtesy of my wife to give folks a glimpse into our lives. We make this trip every other week from Michigan to Minnesota to get Clark what we hope will be a life saving treatment. These opportunities are only possible thanks to the generosity of people like all of the friends I have made on this platform. Forever and always, thank you 💜

A little video courtesy of my wife to give folks a glimpse into our lives. We make this trip every other week from Michigan to Minnesota to get Clark what we hope will be a life saving treatment. These opportunities are only possible thanks to the generosity of people like all of the friends I have made on this platform. Forever and always, thank you 💜

34,370 görüntüleme • 6 ay önce

Proud dad moment 🥺 Sanfilippo is relentless and as it progresses kids ultimately end up immobile and bed bound. By the age of 5/6 many kids struggle to walk and begin to spend much of their time in a wheelchair or stroller. On Saturday before enjoying a Buckeye win, we went to our local apple orchard and Clark dominated the big jumping pillow and was able to enjoy it with his friends without falling! We remain incredibly hopeful that his treatment is working and pray that it is something he will be able to get indefinitely 💜

Proud dad moment 🥺 Sanfilippo is relentless and as it progresses kids ultimately end up immobile and bed bound. By the age of 5/6 many kids struggle to walk and begin to spend much of their time in a wheelchair or stroller. On Saturday before enjoying a Buckeye win, we went to our local apple orchard and Clark dominated the big jumping pillow and was able to enjoy it with his friends without falling! We remain incredibly hopeful that his treatment is working and pray that it is something he will be able to get indefinitely 💜

38,844 görüntüleme • 8 ay önce

Clark got a few surprise Christmas presents today! Thank you so much Matt and Andrew for making his day!

Clark got a few surprise Christmas presents today! Thank you so much Matt and Andrew for making his day!

49,985 görüntüleme • 1 yıl önce

Join us on our most recent trip to Minnesota! Typically we fly but due to the weather our flight was cancelled so we had to drive. Had some hiccups along the way with the rental car but we made it on time and Clark received his 18th dose of the treatment! We continue to be filled with hope that this treatment is halting the disease and changing the future for kids with this disease.

Join us on our most recent trip to Minnesota! Typically we fly but due to the weather our flight was cancelled so we had to drive. Had some hiccups along the way with the rental car but we made it on time and Clark received his 18th dose of the treatment! We continue to be filled with hope that this treatment is halting the disease and changing the future for kids with this disease.

14,714 görüntüleme • 5 ay önce

Happy Wednesday everyone ✌️

Happy Wednesday everyone ✌️

14,748 görüntüleme • 8 ay önce

Daha fazla içerik yok.