Anencephaly support group

[Barry Horne's Love Child]

Hi everyone,

I am looking to raise funds for the Shine charity's Anencephaly Support Group to help try and raise awareness of this fantastic support group.

This is a group for anyone affected by the loss of a child due to the diagnosis of anencephaly during pregnancy. The group is managed by Shine, with the help of voluntary administrators, we are in the unique position of being able to offer the support of health professional's from within the group who are on hand to help with any medical concerns, providing both advice and non judgemental support to those who need it.
This is a condition that my wife and I unfortunately have had past experiences with and we feel that had such a support group been available to us when we needed it most may have made a difficult time easier to cope with.

In order to raise funds I'm going to do the 3 main fundraisers that I didn't partake in 2014 and combine the Movember, Stoptober and ice bucket challenge throughout the month of February.

Any donations would be really appreciated,

Text Code Anen50 + donation amount to 70070 or visit my justgiving page

Thanks,

Ian Shawcross

 

[COYBL25]

Hi everyone,

I am looking to raise funds for the Shine charity's Anencephaly Support Group to help try and raise awareness of this fantastic support group.

This is a group for anyone affected by the loss of a child due to the diagnosis of anencephaly during pregnancy. The group is managed by Shine, with the help of voluntary administrators, we are in the unique position of being able to offer the support of health professional's from within the group who are on hand to help with any medical concerns, providing both advice and non judgemental support to those who need it.
This is a condition that my wife and I unfortunately have had past experiences with and we feel that had such a support group been available to us when we needed it most may have made a difficult time easier to cope with.

In order to raise funds I'm going to do the 3 main fundraisers that I didn't partake in 2014 and combine the Movember, Stoptober and ice bucket challenge throughout the month of February.

Any donations would be really appreciated,

Text Code Anen50 + donation amount to 70070 or visit my justgiving page

Thanks,

Ian Shawcross

Hi everyone,

I am looking to raise funds for the Shine charity's Anencephaly Support Group to help try and raise awareness of this fantastic support group.

This is a group for anyone affected by the loss of a child due to the diagnosis of anencephaly during pregnancy. The group is managed by Shine, with the help of voluntary administrators, we are in the unique position of being able to offer the support of health professional's from within the group who are on hand to help with any medical concerns, providing both advice and non judgemental support to those who need it.
This is a condition that my wife and I unfortunately have had past experiences with and we feel that had such a support group been available to us when we needed it most may have made a difficult time easier to cope with.

In order to raise funds I'm going to do the 3 main fundraisers that I didn't partake in 2014 and combine the Movember, Stoptober and ice bucket challenge throughout the month of February.

Any donations would be really appreciated,

Text Code Anen50 + donation amount to 70070 or visit my justgiving page

Thanks,

Ian Shawcross

A very worthy cause, good luck with your fundraising - have donated.

 

[steken1]

Hi everyone,

I am looking to raise funds for the Shine charity's Anencephaly Support Group to help try and raise awareness of this fantastic support group.

This is a group for anyone affected by the loss of a child due to the diagnosis of anencephaly during pregnancy. The group is managed by Shine, with the help of voluntary administrators, we are in the unique position of being able to offer the support of health professional's from within the group who are on hand to help with any medical concerns, providing both advice and non judgemental support to those who need it.
This is a condition that my wife and I unfortunately have had past experiences with and we feel that had such a support group been available to us when we needed it most may have made a difficult time easier to cope with.

In order to raise funds I'm going to do the 3 main fundraisers that I didn't partake in 2014 and combine the Movember, Stoptober and ice bucket challenge throughout the month of February.

Any donations would be really appreciated,

Text Code Anen50 + donation amount to 70070 or visit my justgiving page

Thanks,

Ian Shawcross

Good luck with it all. I'll donate a few quid when I get paid. I'm sure it's not easy but a bit of an explanation about what it is might help convince a few others too???

 

[The Esk]

Lads, just a general disclaimer for any links for donations to charity, the site (grandoldteam.com) can not in any way endorse or guarantee the validity of any poster asking for donations. This is not aimed at the originator of this thread, just a gentle reminder.

 

[Woolly Blue]

Hi everyone,

I am looking to raise funds for the Shine charity's Anencephaly Support Group to help try and raise awareness of this fantastic support group.

This is a group for anyone affected by the loss of a child due to the diagnosis of anencephaly during pregnancy. The group is managed by Shine, with the help of voluntary administrators, we are in the unique position of being able to offer the support of health professional's from within the group who are on hand to help with any medical concerns, providing both advice and non judgemental support to those who need it.
This is a condition that my wife and I unfortunately have had past experiences with and we feel that had such a support group been available to us when we needed it most may have made a difficult time easier to cope with.

In order to raise funds I'm going to do the 3 main fundraisers that I didn't partake in 2014 and combine the Movember, Stoptober and ice bucket challenge throughout the month of February.

Any donations would be really appreciated,

Text Code Anen50 + donation amount to 70070 or visit my justgiving page

Thanks,

Ian Shawcross

Mate, Steken's advice on giving us some background is a good idea.
It might be useful to put a link in to your JustGiving site as well ?

 

[Barry Horne's Love Child]

Thanks for the feedback and donations, really appreciated.
Anencephaly is a fatal neural tube defect developed during the first few weeks of a pregnancy. Part of the skull and brain fails to form, as well as often facial and congenital defects. If the parents decide to carry on a pregnancy too full term then the child will usual only live a very short period of time.
I decided to set up a support group as my wife and I have been through this three times in the past five years and after diagnosis was given very little information about the condition or follow up care, we found that looking on the internet for information was often limited and support groups where mainly american based or judgemental pro-life views. We aimed to set up a UK based support group that offers non-judgemental advice and support from medically qualified volunteer admins and fellow group users.

 

[Barry Horne's Love Child]

Had a few anonymous donations also, so if there from anyone on this site, thanks

 

[COYBL25]

Thanks for the feedback and donations, really appreciated.
Anencephaly is a fatal neural tube defect developed during the first few weeks of a pregnancy. Part of the skull and brain fails to form, as well as often facial and congenital defects. If the parents decide to carry on a pregnancy too full term then the child will usual only live a very short period of time.
I decided to set up a support group as my wife and I have been through this three times in the past five years and after diagnosis was given very little information about the condition or follow up care, we found that looking on the internet for information was often limited and support groups where mainly american based or judgemental pro-life views. We aimed to set up a UK based support group that offers non-judgemental advice and support from medically qualified volunteer admins and fellow group users.

Have a look at the website of the disabled charity - Scope. They run something called Face2Face. This a countrywide support network for the parents of children with all disabilities. There are groups of parents who have disabled children who have volunteered to form these groups . These parents then provided emotional and practical support for parents of disabled kids who are struggling with it. Unlike Shine, which is online support, this service is one to one . I can provide you with contact numbers and people to speak to, even if it's just advice. It's a fantastic service mate .

 

[COYBL25]

Ps - you mention the lack of information about the condition and follow up care. This is the most common complaint of parents with children with disabilities - " once we left the hospital that was it to a certain extent ".

That is exactly the reason Scope set up the Face2Face support service across the country. Possibly look at it as a template for what your trying to do with your group ?.

I wish you all the very best mate.

 

[Barry Horne's Love Child]

Ps - you mention the lack of information about the condition and follow up care. This is the most common complaint of parents with children with disabilities - " once we left the hospital that was it to a certain extent ".

That is exactly the reason Scope set up the Face2Face support service across the country. Possibly look at it as a template for what your trying to do with your group ?.

I wish you all the very best mate.

Ta mate, yeah I'll look into the face2face service too see if its something we could possibly use, the group is still only early days so open to any ideas to take it forwards.
A lot of the support we give at the minute is through giving people a way of talking to others who have been through the same process and knowing that their not alone, due to the condition being pretty rare it's something mainly unknown until it affects you. The difference for us is everyone within the group will also be dealing with the loss of a child or guilt of choosing to ending their pregnancy as with anencephaly the child will not live any more than a few hours after birth.

 

[harris78]

worthy cause mate, if you can link to your just giving page i'll happily make a donation.

Good luck with the fundraising and the support group.

 

[COYBL25]

Ta mate, yeah I'll look into the face2face service too see if its something we could possibly use, the group is still only early days so open to any ideas to take it forwards.
A lot of the support we give at the minute is through giving people a way of talking to others who have been through the same process and knowing that their not alone, due to the condition being pretty rare it's something mainly unknown until it affects you. The difference for us is everyone within the group will also be dealing with the loss of a child or guilt of choosing to ending their pregnancy as with anencephaly the child will not live any more than a few hours after birth.

Cheers mate, what you're trying to do sounds almost identical to what Scope are doing albeit you're supporting one specific group of parents . Without insulting your intelligence you need to get professionals involved too as there are lot of things you're dealing with their. Scope use a group of therapists who specialise in grief counselling.

 

[Barry Horne's Love Child]

worthy cause mate, if you can link to your just giving page i'll happily make a donation.

Good luck with the fundraising and the support group.

thanks mate, the link is www.justgiving.com/Ian-Shawcross2/

 

[Barry Horne's Love Child]

Hi, had a few donations from fellow blues on this site, thanks again to those who donated really was appreciated and is going towards a fantastic cause. Here is the link to the final part of my month long challenge ;-)

https://www.youtube.com/watch?v=pkfWzd1u70k