A Soon Approaching Opportunity Has Been Presented!
In support of
Simon
View Support Registry
Simon
Doctors from Neorgana are hosting a special pop-up clinic in Tennessee from June 15–19, and this is the soonest opportunity we have to help Simon fight back against Sanfilippo syndrome.
Last November, thanks to your incredible support, Simon may be able to take part in the Expanded Access Program for enzyme replacement therapy (ERT). We hope treatment will begin this summer or fall at the latest, but we still don't know exactly when. In the meantime, toxic heparan sulfate continues to build up in Simon's body, causing ongoing damage.
Every day we wait for ERT, Sanfilippo continues to damage Simon's brain. We are racing against a disease that never takes a day off.
Simon just turned 10 years old. This is the age when many children with Sanfilippo begin to experience seizures, loss of mobility, swallowing difficulties, and a rapid decline in abilities. We are doing everything we can to change that trajectory. That's why this opportunity feels so important.
This intensive neuroregeneration program combines advanced brain mapping, qEEG, Dezawa MUSE stem cells, and post-regenerative laser therapy to create the optimal environment for brain repair, neuroplasticity, and healing.
The treatment includes both intranasal and intravenous administration of MUSE cells, supporting regeneration in the central nervous system as well as throughout the body.
The overall goal of this protocol is to:
• Slow disease progression
• Preserve brain function
• Enhance quality of life
• Support motor abilities
• Delay and reduce the impact of symptoms
Following the MUSE cell treatment, a specialized laser protocol is designed to help create the ideal neurological environment to support Simon's:
• Cognitive function and memory
• Attention and focus
• Language and communication
• Motor planning and coordination
• Behavioral regulation
• Sleep quality
• Sensory processing
• Autonomic nervous system regulation
We know this is not a cure for Sanfilippo syndrome. But if it can help preserve Simon's abilities, slow further damage, and give him more time to learn, communicate, move, and enjoy life, then every effort is worth it.
Reaching our $20,000 goal will allow Simon to participate in the complete neuroregeneration program and receive this time-sensitive care while we wait for ERT to begin.
Please consider sharing Simon's campaign. Every contribution, every share, and every act of kindness helps us move one step closer to protecting Simon's brain while we wait for ERT. Time matters for children with Sanfilippo, and right now, Simon needs all of us.
With sincere gratitude and love,
Alina and Jeremy
(Simon's parents)
Last November, thanks to your incredible support, Simon may be able to take part in the Expanded Access Program for enzyme replacement therapy (ERT). We hope treatment will begin this summer or fall at the latest, but we still don't know exactly when. In the meantime, toxic heparan sulfate continues to build up in Simon's body, causing ongoing damage.
Every day we wait for ERT, Sanfilippo continues to damage Simon's brain. We are racing against a disease that never takes a day off.
Simon just turned 10 years old. This is the age when many children with Sanfilippo begin to experience seizures, loss of mobility, swallowing difficulties, and a rapid decline in abilities. We are doing everything we can to change that trajectory. That's why this opportunity feels so important.
This intensive neuroregeneration program combines advanced brain mapping, qEEG, Dezawa MUSE stem cells, and post-regenerative laser therapy to create the optimal environment for brain repair, neuroplasticity, and healing.
The treatment includes both intranasal and intravenous administration of MUSE cells, supporting regeneration in the central nervous system as well as throughout the body.
The overall goal of this protocol is to:
• Slow disease progression
• Preserve brain function
• Enhance quality of life
• Support motor abilities
• Delay and reduce the impact of symptoms
Following the MUSE cell treatment, a specialized laser protocol is designed to help create the ideal neurological environment to support Simon's:
• Cognitive function and memory
• Attention and focus
• Language and communication
• Motor planning and coordination
• Behavioral regulation
• Sleep quality
• Sensory processing
• Autonomic nervous system regulation
We know this is not a cure for Sanfilippo syndrome. But if it can help preserve Simon's abilities, slow further damage, and give him more time to learn, communicate, move, and enjoy life, then every effort is worth it.
Reaching our $20,000 goal will allow Simon to participate in the complete neuroregeneration program and receive this time-sensitive care while we wait for ERT to begin.
Please consider sharing Simon's campaign. Every contribution, every share, and every act of kindness helps us move one step closer to protecting Simon's brain while we wait for ERT. Time matters for children with Sanfilippo, and right now, Simon needs all of us.
With sincere gratitude and love,
Alina and Jeremy
(Simon's parents)
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