A call for your help from my family and I

Dear friends of TSR, I'm reaching out to you in the hope you can support my family and I with a campaign currently underway. I have the support of the mod team to share this with you.

My two daughters both have a condition called PKU (Link) and are unable to metabolise protein. They're on a very strictly controlled diet to avoid serious health complications and, as I'm sure you can imagine, this limits their (and our) quality of life. There is a campaign underway to get PKU sufferers a treatment that could significantly improve their quality of life. This treatment (Kuvan) has been available through other European state healthcare systems for over 10 years.

If you would be willing to support us, could I ask that you sign the petition and share this with your friends and family?:


I appreciate that not all of you are in the UK but perhaps you know friends or family that are that you can share this with. Below is a link to a Daily Express article that contains more information if you wish to know more:


Thank you for taking the time to read this.

Kind Regards,

Chris, Lily (5) and Isla (3)

View attachment 52417
Duly signed, Chris. Fingers crossed for progress.

S.
 
Did anyone else get an update email regarding this?
Hi Karl. The Government have indeed responded and it can be found here:


Biomarin are now back at the table so hopefully there'll be some progress.
 
Dear friends of TSR, I'm reaching out to you in the hope you can support my family and I with a campaign currently underway. I have the support of the mod team to share this with you.

My two daughters both have a condition called PKU (Link) and are unable to metabolise protein. They're on a very strictly controlled diet to avoid serious health complications and, as I'm sure you can imagine, this limits their (and our) quality of life. There is a campaign underway to get PKU sufferers a treatment that could significantly improve their quality of life. This treatment (Kuvan) has been available through other European state healthcare systems for over 10 years.

If you would be willing to support us, could I ask that you sign the petition and share this with your friends and family?:


I appreciate that not all of you are in the UK but perhaps you know friends or family that are that you can share this with. Below is a link to a Daily Express article that contains more information if you wish to know more:


Thank you for taking the time to read this.

Kind Regards,

Chris, Lily (5) and Isla (3)

View attachment 52417
Signed
Take care all of you and stay safe
 
Dear friends of TSR, I'm reaching out to you in the hope you can support my family and I with a campaign currently underway. I have the support of the mod team to share this with you.

My two daughters both have a condition called PKU (Link) and are unable to metabolise protein. They're on a very strictly controlled diet to avoid serious health complications and, as I'm sure you can imagine, this limits their (and our) quality of life. There is a campaign underway to get PKU sufferers a treatment that could significantly improve their quality of life. This treatment (Kuvan) has been available through other European state healthcare systems for over 10 years.

If you would be willing to support us, could I ask that you sign the petition and share this with your friends and family?:


I appreciate that not all of you are in the UK but perhaps you know friends or family that are that you can share this with. Below is a link to a Daily Express article that contains more information if you wish to know more:


Thank you for taking the time to read this.

Kind Regards,

Chris, Lily (5) and Isla (3)

View attachment 52417

Chris, many thanks for sharing this, petition sighed; all the very best to you and your family, Chris
 
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