Supporters join Beat SCAD for annual walk

Supporters join Beat SCAD for annual walk

More than 70 people walked to Beat SCAD on Saturday 14th September. The weather was fantastic and the route in Coombe Country Park, Coventry, took us through some lovely parts of the park and provided a beautiful environment for the SCAD community to come together and support each other. Walkers included SCAD patients, families and friends. Click here to see some of the highlights.

After the walk, Rebecca Breslin, Chair of Beat SCAD, talked to the group about Beat SCAD, our mission, achievements and plans for the future, including our current fundraising campaign ‘The Alice Project’. This important campaign is raising £64,000 to pay for research fellow Dr Alice Wood to stay on at Leicester for another year of research into SCAD, focusing on subgroups including male SCAD patients, pregnancy/post-partum cases and those who have experienced a recurrence of SCAD.

Our fundraising target for the walk is £16,000 and our page total currently stands at 46% with a fantastic contribution of over £3,000 coming from the fabulous Scottish Patient Group who hosted their walk in Edinburgh on 31 August.

Funds raised from registration fees (over £750), online donations, plus on-the-day donations and merchandise sales (over £500), which included sales of our brand new ‘hot off the press’ lapel badge, all go into the fund for ‘The Alice Project’.

There is still time to donate to ‘The Alice Project’ if you are able. Huge thanks to all who have contributed already. The research is essential, and we must do everything we can to keep it and allow it to move forward to find the answers to our many questions.

Dr David Adlam, who leads the UK SCAD research, then updated us on progress and took questions from the audience.

He said some more papers about different aspects of the research are due to be published in the coming months, including an MRI scan study that will shed light on the heart damage caused by SCAD. So far it seems that the vast majority of SCAD patients have very little long-term damage to their hearts.

He added that the recurrence risk is approximately 10% over a 3-3.5-year follow-up and the outlook for those who have a recurrence is generally good.

Dr Adlam is working with French, US and Australian research teams on genetic aspects of SCAD and biomarker studies are being carried out in collaboration with a Spanish research team which (in the distant future) could pave the way for earlier diagnosis of those at risk of SCAD via a blood test.

Research is also being done on entire vascular systems to investigate links with FMD and other vascular conditions. Dr Adlam explained that for the vast majority of SCAD patients who also have FMD, this diagnosis is clinically unimportant and rarely requires a change to their medication or lifestyle. A tiny number will have worrying signs associated with FMD (eg aneurysms) that will need monitoring. It appears that FMD is less commonly found in male SCAD patients.

For those who have signed up to take part in the research, Dr Adlam told us the research team will be sending out follow-up questionnaires for patients to update them on their progress, so if you receive one, please do complete and send it back as soon as you can. Questionnaire responses are a key part of the research and contribute to the statistics patients are asking for, such as recurrence rate and how common post-SCAD chest pain is.

Many thanks to everyone who came to the walk, to David and Martina Fletcher for their help in organising the walk and venue, to Sally Bee for starting the walk off, Dr David Adlam for updating us on the research and Theo Leeds for filming the event.

Stay tuned for the video of Dr Adlam’s talk!

 

Scottish patient group raises £3,000

Scottish patient group raises £3,000

An essential part of the Beat SCAD mission is to provide support to everybody affected by SCAD, and time and time again the charity sees how beneficial ‘in-person’ support is, but delivering this is quite the challenge for our small team when the SCAD community are located throughout the length and breadth of the country, meaning attending the Beat SCAD walks and conferences is just not possible for some. Beat SCAD strongly encourages local groups to come together and bring the Beat SCAD mission to life in their region.

The Scottish Patient Group, established in May of this year, are a shining example of the strength, determination and power that a local group develops. Led by SCAD patient Margaret Davis, ‘Team Scotland’ are driving the Beat SCAD mission to raise awareness, provide support and fund research. They have already been making waves in the Scottish Parliament earlier this year, highlighting key issues and raising vital questions about the care options for SCAD patients in Scotland.

On 31 August, the Scottish SCAD patient group hosted a walk in Edinburgh for patients, families and friends to raise awareness and money for research into SCAD.

They set up a fundraising page for donations and have raised more than £3,000 for The Alice Project. Dr Alice Wood is currently researching SCAD and Beat SCAD has committed to raising £64,000 to fund a further year’s study.

Organised by Margaret Davis, Mary Galbraith, Colette Gillespie and Roisin Falconer, the walk was a great success, with 70 walkers taking part including 11 SCAD patients – the largest gathering of Scottish SCAD survivors to date (and setting a nice target to beat with their next walk!)

The group met at the Scottish Gallery of Modern Art, where Beat SCAD Scottish Patient Lead Margaret welcomed the group and updated them about the patient group activities. After a picnic in the grounds of the gallery, the group set off for their 5km walk heading towards Stockbridge, which took in some scenic parts of the city by the Water of Leith, passing through the beautiful Dean Village and taking in some magnificent Georgian architecture along the way.

Special T-shirts were printed and bought by walkers, helping to raise funds. The Scottish Patient Group even designed their own tartan, proudly displayed in a heart design on the back of the shirts with the Beat SCAD charity logo on the front. Great job Team Scotland – you all looked fabulous!

Margaret Davis said: “The main purpose is to be here for each other.”

Jennifer Heenan attended the walk and said: “A proud day for Beat SCAD and our Scottish Patient Group. Well done to everyone who took part and wished us well and was with us in spirit.”

Everybody at Beat SCAD would like to extend our gratitude to the Scottish Patient Group for everything you are doing. We look forward to hearing more about your ventures, and for other local groups to develop in a similar way. Together we will beat SCAD.