Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)

Fundraising2022

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Dunderry Coffee Morning Update

Took place on Sunday 11 December and started at 12 noon until late.
It was a very busy day with a steady flow of people from the surrounding area.
Many Thanks to Jackie and Ian O’Brien who were the hosts for this event,
There was plenty of mulled wine, mince pies, and all festive fare with home produce.
“The coffee afternoon was in memory of our dearest sister Dolly and Dad Derry, whom we all miss very much.”

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SOFT Ireland Christmas Cards Fundraiser

All our SOFT babies’ names have been included in our newly designed Christmas Cards and there are four designs  – baubles, snowman, tree and star.

Postage charged at a flat rate of no matter how many packets you buy!

Ann Rooney Chairperson S.O.F.T. Ireland

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SOFT Ireland Melbourne Marathon 2022

Melbourne Marathon 2022

Sunday 2 October 2022

42.195km

 

Estimated Start Time in Irish Time Sat 01 Oct 2022 21:00

Congratulation to Michael Rooney on finishing the Melbourne Marathon.

Well Done  on raising funds for SOFT!

See result HERE

Michael was part of Australia’s largest marathon and race alongside marathon legends. Circle around Albert Park Lake, Flinders Street Station, pass the St Kilda beach foreshore and cross the finish line at the MCG to cheers from supporters, family and friends.

 

 

 

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Mercury Lilliput Legend Adventure Race 16 July

 

Mercury Lilliput Legend Adventure Race

A Team from Mercury will participate in the Lilliput Legend Adventure Race at Lilliput Adventure Centre, Lough Ennell, Co. Westmeath on Saturday, 16 July 2022. This all in aid of SOFT Ireland.

Mercury was founded in Dublin, Ireland in 1972 and is a leading European engineering contractor specialising in the provision of contracting, mechanical, electrical, fire protection and ICT Services across a range of key sectors.

S.O.F.T. Ireland is a voluntary group dedicated to providing support for families of children diagnosed and born with Patau’s Syndrome (Trisomy 13), Edwards’ Syndrome (Trisomy 18). Support is provided during prenatal diagnosis, during the child’s life and after the child’s passing.

The Lilliput Legend Adventure Race is an adventure race in Lough Ennell, Co. Westmeath on Saturday, 16 July 2022.

They are looking for your support through GivenGain and on the day in Lilliput.

Kayaking, Cycling and Running will test their ability and endurance with this team building exercise as well as supporting SOFT Ireland.

Kayak through the crannogs of King Malachy on Lough Ennell, Cycle through the splendour of the bog of Allen and run, stumble, hike, climb, over the extinct volcano that is Croghan Hill to one of Ireland’s greatest viewpoints. The whole event is based from Lilliput Adventure Centre.

This course is ideal for first time adventure racers but still is demanding and challenging. The race has wave starts approximately every 30 minutes rated on ability and numbers

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Vhi Women’s Mini Marathon Sun 5th June 22

 

SOFT Ireland VHI Women’s

Mini Marathon

Sunday 5 June 2022

Congratulations

to all the ladies

who took part

 

The SOFT Ireland Vhi  Women’s Mini Marathon delivered a fun experience that you would not want to miss and a great opportunity to support SOFT Ireland (The Support Organisation for Trisomy 13 and Trisomy 18). Walk, jog or run 10K in aid of S.O.F.T.  It was up to you but most walked it with Friends, relations and colleagues. This is the largest all women’s event of its kind in the world! There is a wonderful atmosphere and it’s a great experience.

Thank You to everyone for participating in this years VHI mini marathon. See links on each to donate.

Linda

Anne

Paula

Allison

For the 5th year running, Vhi are refunding all of their members who enter the Vhi Women’s Mini Marathon. Vhi members can use the online claiming tool, ‘Snap & Send’, via the Vhi app to claim their refund from their entry fees, backdated to the 2nd of March 2022 and available until the 31st of December 2022. VHI have advised that order confirmation emails act as a receipt. Select other for Treatment Type and then Mini Marathon appears at top of next box. Then select amount (€30). This is a very generous gesture by VHI who will give you back €15 (50%).

Watch out for updates below

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Rita’s 80 Kilometre Challenge for Jessica

Rita Kavanagh set up a Go Fund Me page to raise money for SOFT Ireland . Rita is a longtime member and did it in memory of her daughter Jessica.

Rita wanted people to join her to make a difference by raising money in aid of SOFT.

Rita thanked people for their contribution for a cause that meant so much to her.

Rita set up a go fund me for SOFT in support of my daughter Jessica in December 2021.

At the end the funds transferred from GO Fund Me through Paypal to SOFT.

Also see

“A heartbroken mum is preparing to bury her daughter for a second time after getting her final remains some 26 years after her death.”

Irish Mirror Sun 3 Apr 2022

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Family Outing & Printed Book Launch Sat/Sun 9/10 April 2022

 

SOFT Family Outing Apr2022

S.O.F.T. Ireland Family Outing & Printed Book Launch Sat/Sun 9/10 April 2022 Shearwater Hotel, Ballinasloe

 

S.O.F.T. Ireland Family Outing

& Printed Book Launch

“Why Our Baby?”

Sat/Sun 9/10 April 2022 

Shearwater Hotel, Ballinasloe

 

 

 

 

All went well at the S.O.F.T. Ireland Family Outing & Printed Book Launch on Sat/Sun 9/10 April 2022 Shearwater Hotel, Ballinasloe.

See the Family Tree above with children’s names connected to the weekend.

A big THANK YOU to everyone who attended and helped to make it a success.

Find a link  to a photo Gallery of the weekend. HERE .

Slideshow/Gallery Shearwater April 2022

 

SOFT Book Launch Oct 2021

SOFT BOOK Launch Oct “021 Photos and Front Cover “Why Our Baby”

Why Our Baby?

Sheerwater Hotel

Shearwater Hotel

 

 

 

 

 

 

 

 

 

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Support Trisomy Awareness Month Appeal March 2022

 

Trisomy 13 Trisomy 18

Support SOFT Ireland now

This campaign is now Open to the General Public and Businesses

 

Trisomy 18 (Edwards’ Syndrome) Awareness Day

Trisomy 18

March is Trisomy Awareness month.

Today Friday 18 March is Trisomy 18 (Edwards’ Syndrome) Awareness Day

Friday 18 March 2022 is Trisomy 18 Awareness Day. It was chosen specifically because it represents 3 chromosomes on the 18th chromosome. One in 6000 pregnancies is not just a statistic it’s real. Trisomy 18, also known as Edwards’ Syndrome, is a life limiting chromosomal syndrome.

Trisomy 13 (Patau’s Syndrome) Awareness Day

Trisomy 13

Trisomy 13

 

 

Sunday 13 March 2022

Let us remember all our special T13 babies today

 

Trisomy 21 (Down Syndrome) Awareness Day

March is Trisomy Awareness month.

Today Monday 21 March is Trisomy 21 (Down Syndrome) Awareness Day

 

 

Every March people come together to bring awareness and support to those with Trisomy conditions. While most people have 23 pairs of chromosomes, some have a condition that causes extra partial or full chromosomes in their cells. Those extra chromosomes can cause a range of health problems, learning difficulties as well as delays in physical development. Trisomy Awareness Month, observed in March raises awareness about trisomy conditions and the challenges these conditions may pose to individuals and families,

SOFT Ireland is appealing to the General Public and Businesses to show your support with a small donation to our charity during Trisomy Awareness Month of March 2022 to help us continue our work. Some businesses are looking at how they can make a positive social impact. Well here is an opportunity.

Support Organisation For Trisomy (S.O.F.T.), a national registered charity, is a voluntary group dedicated to providing support, assistance and information to families of children diagnosed and born with Patau’s Syndrome (Trisomy 13) and Edwards’ Syndrome (Trisomy 18).

Support is provided during pre-natal diagnosis, during the child’s life and after the child’s passing.

Fundraising and donations are our main source of income and that is very challenging in these difficult times

Trisomy 13 and Trisomy 18

Appeal to the General Public

March 2022

 

Krissi Hope, living with Trisomy 13. Fight song

Lyrics Rachel Platten Fight Song
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong (I’ll be strong)
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Know I’ve still got a lot of fight left in me
Source: LyricFind
Songwriters: Dave Bassett / Rachel Platten
Fight Song lyrics © Sony/ATV Music Publishing LLC

 

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Sphere17 Christmas Market

 

Cheque Presentation from Spere17 in Mislands Hotel

Cheque Presentation from Spere17 in Midlands Hotel

Sphere17 Christmas Market

Held Thurs 9th December 2021

Thanks to Carol and Sphere17 for nominating SOFT Ireland and inviting us along to their wonderful market in aid our SOFT Children. It was a great day with lots of Wooden Crafts, Jewellery, Baking, Food Stalls and not forgetting Santa’s Grotto. They also had a raffle. A cheque was presented from Sphere17 to SOFT at our meeting in Midlands Hotel Portlaoise on Sat 12 Feb 2022.

 

See their Tik Tok Video of Event

Sphere17 Christmas Market

Sphere17 Christmas Market

” Go raibh maith agat d’Fhoireann agus do Dhaoine Óga Sphere17 “

” Thank you to the Staff and Young People of Sphere17 “

 

 

Sphere 17 Regional Youth Service were fundraising for SOFT and Thank You so much we appreciate all the effort, and hard work
Sphere 17 North Dublin Services include Core youth service activity:
Drop-in, Group Work (interest and/or issue based), Individual Support, Outreach (including detached youth work), Outings and summer projects, Residential Activities and Events

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Giving Tuesday A Christmas Gift

Giving Tuesday

30 November 2021

A Christmas Gift for

SOFT’s Special Children

For One Week Only

 

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This fundraiser is now closed and One 4All Cards are on their way and ready to be added to Christmas Cards to be send out to our Special Chrildren.

 

 

Update for Giving Tuesday

Help us start the Christmas season off right with Giving Tuesday!

Support a Christmas Gift for SOFT’s Special Children that would be close to your heart on this global day of giving back. By contributing to our campaign, you’re helping us to make it come true. Share this message with your friends and family. Welcome to this year’s biggest day of global giving! Today, we’re aiming to send A Christmas Gift of a One4All card for €25 SOFT’s Special Children by raising the funds for it in the next 24 hours or so – and we need your help to achieve this and why not be proudly able to say “I was part of this”.

The webmaster would like to thank each and everyone of you who contributed and I would like to extend that “Thank You” to everyone who hopes to contribute and be part of this generosity. If you haven’t already given, make a small quick donation to help us achieve our objective and be able to say “I do care”

We are trying to raise funds to give SOFT’s Special Children a Gift for Christmas after another very difficult year with Covid.

Giving Tuesday is a global day of giving on 30 November and is celebrated on the Tuesday following Thanksgiving (in the U.S.). It’s an American phenomenon with an Irish twist!

We are requesting a small (€5, €10 or €20) donation. The Webmaster will guarantee a minimum GOAL if not reached so that each child will receive at least a €25 voucher.

A One4All voucher to be included with a Christmas Card sent out to SOFT’s Special Children this Christmas. All money raised over and above will still go to SOFT’s Special Children.

A unique link for one week only is being created for a short featured campaign on GivenGain and money raised through this link will be used only. (Not the Website Donate Button)

Let’s spread the generosity on Tuesday 30th November and make it a GIVING Tuesday.

I will keep it featured for the rest of the week just in case you forget or don’t get a chance on the day. Also the link will open in advance on Friday 26th November the same day as the Late Late Toy Show. It will have an appeal as well for other charities but if it’s like last year it will be for charities that have a turnover of at least Half a Million. That won’t suit us!

The Webmaster would like to thank each and everyone who contributed last year to this very worthy cause. It was very much appreciated by all SOFT’s special children.

*****Trisomy 18 Trisomy 13 Events