This month we have lots to celebrate, firstly February is Heart Month - we know many of you are planning events and we're also inviting you to take part in our new #ImproveOurRooms campaign to redecorate the Parent's Room at the Evelina London Children's Hospital.

We also have exciting news to share about our successful DLA campaign as well as news of upcoming echo events, including the dates of our bereavement workshops and community day.

We are delighted to announce that DLA Assessors will now receive guidance and be trained on congenital heart disease (CHD). A medical professional from the CHD community has also been recruited as a medical advisor to the DLA review panel.

For over a year charities including echo have been working together to ask the government to include information about congenital heart disease in the DLA assessment guidelines. We've had many joint charity meetings and attended meetings with MP's, including an event at the House of Commons where two echo members came along to share their stories.

Professor Anderson represented the Evelina London and the BCCA at the event where we asked MP's to contact ministers and encourage this change.

Lots of echo members sent letters and emails to their MP's asking them to support us and shared personal stories with them - thank you all!

Whilst we know this means not all children who apply will be successful, and it's important to always remember that not all children are eligible, we celebrate the news and hope that in future assessors at least understand the condition a little more when making those important decisions.

echo is very excited to soon be opening its first office opposite the Evelina London Children’s Hospital.

As well as acting as the charity’s head office the new space offers up:

• A parent’s resource room: a quiet, comfortable, private space for parents when needed, complete with soft furnishings and access to a computer
• A bright and welcoming space for training sessions, volunteer events, bereavement workshops, large meetings and gatherings
• Ample storage space for equipment required by the hospital such as comfort, welcome, discharge and pregnancy packs

As soon as the office has opened for business we will let you know - we invite you to come along and say hello!

We're delighted to introduce you to this year's team echo - the group of awesome people who have signed up to run the streets of London this year and raise money for echo.

The majority of runners are echo parents, please take a moment to read their stories and support them: London Marathon: team echo 2017

We have confirmed dates for our bereavement workshops for Spring and Autumn - and our community remembrance day.

Information here

Our bereavement workshops start on Sat 11th March, so please contact us soon if you are interested in attending. 

Today in celebration of #HeartMonth we launch our new campaign #ImproveOurRooms.

Supporting children with heart conditions includes making sure their families have support and somewhere to turn. Right now, echo are planning some exciting changes to the tired and bare parent's room at the Evelina London Children’s Hospital on Savannah Ward. We are also creating a new parent's resource room close to the hospital (within the echo office) and we need your help.

Money raised will help us to develop, design and maintain these rooms including replacing equipment and providing play & crafts to the ward/rooms.

To donate, please visit our JustGiving page or text ECHO01 £10 to 70070. Thank you.

For more information on how to get involved with #HeartMonth please contact emma@echo-evelina.org.uk

We have two exciting challenge events for our members and supporters to take part in this year:

Get messy for echo at the Color Obstacle Rush on 10th June - this does look like it would be very funny to take part in!

For those keen cyclists amongst you this year we're inviting you to support echo by taking part in the London to Brighton Cycle ride on 17th September.

The NIHR Cardiovascular Healthcare Technology Co-operative (HTC) are holding an open day on 2nd March 2017, at St Thomas' Hospital.

The Cardiovascular HTC has been set up to identify, encourage and facilitate the development of new medical devices and healthcare technology driven solutions that will improve the diagnosis, treatment and well-being of patients with heart disease. The event will showcase the clinical research that is part of the HTC.

This is a great opportunity to find out about the exciting new technology being developed to diagnose and treat patients with heart disease.  The day will consist of presentations, each being 10 – 20 minutes long with time to ask questions. 

More info and to register attendance

We recognise that lots of people may have moved house since first registering with echo. We're about to send a letter to all echo members and we therefore want to make sure we have your correct address!

If you have changed address and you're not sure if you've informed echo, please email Emma with your new contact information. 

Do get in touch with us via social media to let us know what you're doing for #HeartMonth - we'd love to share your stories.

Best wishes from team echo,

Samantha, Emma, Siobhan, Diana and Hayley