**** UPDATE****

From BM Weekend Organisers:

Following the escalation of coronavirus, we have been taking advice from official bodies, while also working closely with other mass event organisers to understand the situation for the industry, our participants and supporters.

It is with heavy hearts that we have to deliver the disappointing news that the Brighton Marathon Weekend has been postponed until Friday 18th September - Sunday 20th September 2020. (Brighton Marathon, BM10k and BM Ride taking place on Sunday 20th September.)

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We are so very grateful for everyone's efforts in sharing our JG page, our story and donating.

We WILL be taking part in the event on the new date *20th September 2020* and continue to be very grateful if you could continue to support.

Many thanks

The Eva Rose Trust Team

xxx

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BM Ride 50K (31 Miles)- On Sunday 19th April 2020, Eva's Mummy, Daddy, Uncle, Pops and Grandad will be taking to their bikes to take part in the 50K ride around Brighton as part of their Marathon Weekend.

We would like to dedicate each mile we do to a loved one who is no longer with us. If you would like to sponsor a mile in memory of someone close to you then please do get in touch. The 19th Mile will be in memory of Eva Rose.

We hope that through our efforts, we can raise awareness of all the Eva Rose Trust stands for and raise a few more pennies.

We would be so grateful if you could share our page with everyone you know.

Thank you in advance for your continued support.

Eva Rose Trust Team xxx

About the Eva Rose Trust:

Lou and Tom set up a trust in memory of their daughter, Eva Rose. Their twin girls, Eva Rose and Una Mae were born 12 weeks early at just 28 wks +1 gestation. Tragically, at just 4 1/2 weeks old , Eva developed NEC. After various medication and two surgical procedures, sadly there was little that could be done for Eva and she passed away on 19th March 2017.

Our Mission:

-To provide support to families who are currently experiencing life with a premature baby(ies) in Special Care and families who have experienced losing a baby(ies) due to prematurity and in some cases specifically Necrotising Enterocolitis (NEC).

-To work with the NHS and NICU, SCBU and LNC units to ensure there is consistency in practice when diagnosing, treating and preventing NEC and to educate in areas of need.

-To carry out and fund research into NEC, collaborating with other organisations and medical professionals in the aim of eradicating NEC.

Through this, we will raise awareness of Prematurity, NEC and the reality of living through these experiences. We strive to make babyloss no longer a taboo.

Our Vision: Research, Educate, Support

Research:

Fund research into NEC

Utilise existing research to improve practice

Collaborate with organisations to further the understanding of NEC

Run surveys to improve the understanding of experiences, practice, and support available.

Educate:

Understand current practice across Hospital Trusts.

Identify inconsistencies in diagnosis, treatment and outcomes.

Identify level of support given to families throughout care.

Identify information provided to families about NEC and timescale.

Provide Education opportunities to NICU, SCBU and LNC units and all staff within.

Support:

Identify breadth of support needed.

Tailor support to individual family needs.

Provide families with children living with NEC with information and support.

Provide families who have lost a child(ren) to NEC with support.

Provide information about NEC to existing families on units prior to NEC.

Thank you in advance, for your support.