Brutus Stark's banner

Brutus Stark

@iron_brutus • 5,301 subscribers

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

Shorts

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 просмотров

💜 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!

48,090 просмотров

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 просмотров

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!

29,938 просмотров

Videos

Anya Rossi

sweetdream.ai

SweetDream.ai•Sponsored•Livecam

Watch Anya Live

Anya is streaming live right now! Join her private show and enjoy exclusive content.

Exclusive private shows

1.2k viewers online

Private Show

Join now for exclusive access

Free preview available • Premium content

Today we get to share something really special, Clark got his Make-A-Wish! 💙 When we first started thinking about what his wish could be, we tossed around all kinds of ideas. We thought about taking him to Disney. We thought about a hot tub. We talked about all the big, exciting things that a Make-A-Wish could make possible. But ultimately, we realized that the thing that would make the biggest difference in Clark’s everyday life that he could enjoy for a long time wasn’t a vacation or something we could enjoy for a week or two. It was freedom. Clark absolutely loves being outside. He loves running, exploring, playing, and just being able to enjoy the outdoors. But Sanfilippo has made something as simple as letting him play in the backyard incredibly difficult. Children with Sanfilippo are high risk for eloping. Because of his elopement, he can take off in an instant and quickly end up in a neighbor’s yard, near the road, or somewhere we can’t safely let him go. So for his wish, we decided to fence in our backyard. To some people, a fence might not sound like the traditional “wish” you imagine when you think of Make-A-Wish. But for Clark, it means so much more than a fence. It means being able to open the back door and let him run. It means letting him explore and play without us having to constantly chase after him. It means giving him a little more autonomy and independence in a world where Sanfilippo has already taken so much of that away. And most importantly, it means we can watch him play freely while knowing that he is safe. That’s what made this the perfect wish for our boy. 💜 We are incredibly grateful to Make-A-Wish and for understanding that sometimes a wish isn’t about one extraordinary day. Sometimes it’s about making every ordinary day a little more extraordinary. Also, a huge thank you to Simtech Outdoor Solutions & Landscape Supplies for doing such a wonderful job!

Today we get to share something really special, Clark got his Make-A-Wish! 💙 When we first started thinking about what his wish could be, we tossed around all kinds of ideas. We thought about taking him to Disney. We thought about a hot tub. We talked about all the big, exciting things that a Make-A-Wish could make possible. But ultimately, we realized that the thing that would make the biggest difference in Clark’s everyday life that he could enjoy for a long time wasn’t a vacation or something we could enjoy for a week or two. It was freedom. Clark absolutely loves being outside. He loves running, exploring, playing, and just being able to enjoy the outdoors. But Sanfilippo has made something as simple as letting him play in the backyard incredibly difficult. Children with Sanfilippo are high risk for eloping. Because of his elopement, he can take off in an instant and quickly end up in a neighbor’s yard, near the road, or somewhere we can’t safely let him go. So for his wish, we decided to fence in our backyard. To some people, a fence might not sound like the traditional “wish” you imagine when you think of Make-A-Wish. But for Clark, it means so much more than a fence. It means being able to open the back door and let him run. It means letting him explore and play without us having to constantly chase after him. It means giving him a little more autonomy and independence in a world where Sanfilippo has already taken so much of that away. And most importantly, it means we can watch him play freely while knowing that he is safe. That’s what made this the perfect wish for our boy. 💜 We are incredibly grateful to Make-A-Wish and for understanding that sometimes a wish isn’t about one extraordinary day. Sometimes it’s about making every ordinary day a little more extraordinary. Also, a huge thank you to Simtech Outdoor Solutions & Landscape Supplies for doing such a wonderful job!

25,404 просмотров • 14 дней назад

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 просмотров • 1 год назад

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. 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. 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

32,861 просмотров • 6 месяцев назад

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 💜

38,876 просмотров • 11 месяцев назад

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 просмотров • 1 год назад

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.

14,723 просмотров • 8 месяцев назад

Больше нет контента для загрузки