Matt to raise money for Beat SCAD in memory of his mum Carole

Matt to raise money for Beat SCAD in memory of his mum Carole

Matt Johnson has set himself a challenge to run 56 races by the time he is 56, the age his mum Carole died following a SCAD and cardiac arrest on 23 December 2016. The challenge has two aims – to raise money to help fund research and raise awareness of SCAD.

“Carole was an incredible mum,” said her son Matt. “She always put others before herself and her children were her world.” Her death came out of the blue and her family, husband Neil and Matt’s sisters Danielle and Samantha, were completely shocked and, like many people, knew nothing about SCAD. Read Carole’s story here.

Having done some research into SCAD and found Beat SCAD’s and the Leicester research project’s websites, Matt made contact with Dr Adlam, who is leading the research. The family realised that raising awareness and funds for research is key.

“I’m hoping over the next 28 years I can do my bit in helping to find some preventative treatment for SCAD,” said Matt.

Matt’s first race, on 3 September 2017, will be the Filey Lions 10K Beach Race.

“I want to do runs in places that have meaning for my family and links to my mum.” Carole worked at the Aughton Early Years Centre in Rotherham. “I’ve chosen this race as Filey is where my mum and staff used to take some of the children and their parents from her nursery away for a short holiday every year. The race actually goes past the place they used to stay,” said Matt.

Thanks to Matt and his family for all they are doing to raise awareness of SCAD.

We look forward to hearing about the race on 3 September and will update you on dates of future races.

56 races before I'm 56

Matt is raising money for Beat SCAD by running 56 races before he’s 56

To donate to Matt’s ‘56 races before I’m 56’ challenge go to: www.totalgiving.co.uk/mypage/mjohnsonscad56

And to follow his progress, follow him on social media:

Twitter  @MJohnsonSCAD56

Facebook: 56 races before I’m 56  www.facebook.com/MJohnsonSCAD56

 

 

 

 

David cycles more than 1,100 miles to raise awareness and funds for SCAD research

David cycles more than 1,100 miles to raise awareness and funds for SCAD research

David Wring’s wife Sarah had a series of heart attacks 15 months ago, caused by SCAD. They are both committed to raising awareness and funds for Beat SCAD and the SCAD research project in Leicester, so David set himself a massive challenge of cycling from their home in Devon to Nice – more than 1,100 miles.

“My obvious motivation was Sarah’s completely unexpected SCAD episodes, but additionally the unique care from Glenfield Hospital and Dr Abi Al-Hussaini,” said David.

Sarah has never smoked, taken drugs, doesn’t drink and took regular exercise so had no risk factors for normal heart disease.

“Sarah was incredible lucky to be correctly diagnosed at Truro Treliske Coronary unit by a cardiologist Dr Audrius Simaitis, who had recently attended a cardiology seminar in New York and, fortunately, a discussion group about SCAD. But this element of luck needs to be reduced,” said David.

David’s route started on 6 July at Plymouth docks Roscoff, went to St Malo, St Quentin Sur La Homme, Vitré, Angers, Richelieu, St Savin, Bonnat, Peyrat le Chateau, Riom, St Flour, Mende, Pont d’arc, Ballon, Vaison la Romaine, Sault, Greoux, Castellane and finally arriving after 18 days in Nice on 24 July. And making the challenge even harder was the temperature, which reached 39 degrees through Provence.

Cycling 1,300 miles is no mean feat, but David explained why he took on the challenge: “I wanted to do something my friends would believe to be outside of my ability, so I chose to ride my bike from our home in Newquay to Nice – the Atlantic to the Med. I needed to buy a new bike obviously!”

SCAD awareness logo designed by David

SCAD awareness logo designed by David

“I designed a cycle jersey and had it made up. The design incorporates the heart and the bike – my new bike, Aldo, also has the logo on it.” The bike is a hand-built Donhou and the logo is hand sprayed into the finish.

He described the first part of the route: “I rode from my home in Newquay to Plymouth docks to Roscoff, then rode to Morlaix then Renn then St Malo, where I joined my support team Green Jersey French tours. We then cycled to St Michel – approx 80 miles per day.

Then we had a hilly tough day to Bonnet then onto Peyrat le Chateau, at which point I had cycled over 600 miles – and was still not half way! The country is spectacular and vast with enormous fields of sunflowers to take your mind off the long journey and sore bum!”

David made a point of telling absolutely everyone he met on his journey about SCAD, helping raise awareness, and he obviously made an impact. “One chap I met, Edwin, an expert in malaria research at Plymouth University, cycled with me from Roscoff to Morlaix, helping to carry my bags,” he said. We said goodbye at Morlaix and on his return to UK he donated £50!”

Steep challenge

On his designated day off he met two rugby players, who offered him £200 to ride up Mont Ventoux. He was also challenged to wear a tricolor club jersey (see photo). He accepted both challenges.

Ventoux-summit

David at the top of Mont Ventoux – this challenge raised an extra £200

“The climb is a renowned killer with a 9% hill for 22km. It took me 2 hours 15 minutes to ride up that hideous climb, but it was worth £200 for the cause,” he said.

Towards the end of the challenge, he cycled from Gorges de L’Ardeche to Vaison la Romaine. “After the climb out of the gorge, the most stunning road opened up and the ride along the top of the gorge was simply the most spectacular I have ever ridden. After the gorge, we then crossed the Rhone and into Provence following the mighty Mont Ventoux with its white stone cap. The heat was intense – at 39ft my water bottles were really warm, which made hydration tough and no businesses were open and the roads and streets deserted.

“The journey became painfully slow but eventually we made the hotel and, with 2 litres of cold water drunk, the dizziness passed. I’ve never known a taste so sweet as that cold water and it will be one of my top memories.

“Total miles ridden 926!”

On the penultimate day, David had “a spectacular day riding through the Gorges Du Verdon, in south-eastern France. It’s a river canyon with loads of man-made beaches along the edges and it is considered to be one of Europe’s most beautiful areas – I would have to agree it’s stunning! It is about 25km long and the granite walls tower above and in places overhang the road. Awesome scenery throughout, which eased the gradient! Total miles ridden 1,069.”

David completed his cycle in the beautiful city of Nice on 24 July – saddle sore, aching but celebrating his fantastic achievement.

Dave at the end of his mammoth ride in Nice

Dave at the end of his mammoth ride in Nice

The generosity of the people he met and those who have donated via his Just Giving page has been fantastic, but one man stuck in David’s mind.

“When I took a taxi from Clifton Bristol to Temple Meads train station, the driver was Mohammed, a Muslim immigrant from Somalia, in full dress and skull cap. We chatted for the entire journey and when he dropped me off I asked what the fare was. He told me it was £10 and as I went to the boot to collect my bags he extended his hand we shook hands. I felt paper in my hand he closed it and wished me and Sarah good luck. I thought it might be a prayer but it was a £5 note! It made me genuinely cry as this was more than he could possibly afford!”

He has so far raised £2,327 and is hoping to reach a grand total of £2,500. The Just Giving page is still open, so click hear to donate to help further research into SCAD. 

David cycling for Beat SCAD

David cycling for Beat SCAD

David’s determination to complete the challenge can be summed up by his comment about the punishing climb up Mont Ventoux: “I constantly thought of Sarah on the climb as the heat and the pain in my legs were unbearable, but Sarah has never once complained about her SCAD episodes so my effort was nothing in comparison!”

Well done and a massive thank you to David (and his support team) for completing this mammoth challenge. We hope your aching muscles recover soon!

See below for a slideshow of more photos from David’s trip.

 

Beat SCAD donates £25K to Leicester SCAD research

Beat SCAD donates £25K to Leicester SCAD research

Beat presents £25K to Leicester SCAD research project

Thursday 13th July 2017 was a landmark day for Beat SCAD following the presentation of a £25,000 donation to the SCAD research project in Leicester.

Thanks to the hard work and generosity of the SCAD community, Beat SCAD Trustees Rebecca Breslin, Karen Rockell and Debbie Oliver (pictured above) were overjoyed and immensely proud to hand over the sum that will be used towards the salary of the new Clinical Research Fellow, Dr Alice Wood (pictured below left, with Dr David Adlam, who is leading the UK SCAD research project).

Dr Wood is a UCL graduate who joins the Leicester team to replace Dr Abtehale (Abi) Al-Hussaini who is returning to London to a consultant position. Dr Abi will remain involved in the SCAD research programme, as well being available to treat SCAD patients during her weekly specialist clinic.

 

Dr Alice Wood and Dr David Adlam, Leicester University SCAD research project

Since the launch of Beat SCAD in 2015, SCAD survivors, family members, friends and work colleagues have been incredibly busy completing an array of individual and team challenges as well as organising and participating in Beat SCAD events including ‘Scones for SCAD’ bake sales and walks to help raise this fantastic amount for the research programme.

Please take a moment to catch up on highlights of Beat SCAD’s first year by watching our achievements video and reading the annual report.

Beat SCAD Trustee Chair Rebecca Breslin said: “This is our first Beat SCAD donation to the research and we are so happy to present this on behalf of our patient group and supporters. It is exciting to see the money raised being put into action to further the research.

“The research is hugely important to us all and we will do everything we can to fund it to find the answers we are looking for to understand SCAD. It is vital that we keep pushing forward so we must raise more money and find other funding sources.”

Dr Adlam said: “On behalf of the research team at Leicester’s Hospitals and the University of Leicester, I would like to thank Becks and everyone at the Beat SCAD charity for their support and hard work in raising the funds to continue with this important area of research.”

After the presentation, the Trustees met with Dr Adlam, Dr Abi, Dr Wood and Cardiac Research Nurse Ellie Clarke and discussed the research status in the UK, Europe and Worldwide plus plans for next steps with the programme, including additional research team members: scientist Anna Baranowska and NHS-funded academic Dr Marios Magaritis.

Dr Adlam said: “This is an exciting time. Abi is working frantically to analyse the data collected so far and prepare articles for review and publication. We look forward to continuing to work with Dr Abi in her new consultant role in Chelsea and Westminster and welcoming Dr Wood, Dr Magaritis and Ms Baranowska to the SCAD research team. Rest assured we are working flat out with our collaborators around the world to find the answers patients are asking for.”

Rebecca added: “The UK SCAD research team is growing and research overall is increasing worldwide, which is absolutely fantastic. It really feels like progress is being made – even though we don’t have the answers yet, they feel much closer than five years ago when I had my SCAD. The Beat SCAD team feel even more compelled to raise our game with spreading awareness and raising funds for the research.”

Thank you to everyone who has supported us in any way to further the Beat SCAD mission – whether by helping to spread the word about SCAD, being a part of the support network to help others affected by SCAD, volunteering, donating, organising or participating in events. This donation is a result of your hard work and dedication to this cause.

Thanks also to the SCAD Research team at the NIHR Leicester Biomedical Research Centre (formerly Leicester Cardiovascular Biomedical Research Unit) for their continued dedication and support.

Click here for more information about the SCAD research.

Experts discuss links between SCAD and FMD at Cleveland symposium

Experts discuss links between SCAD and FMD at Cleveland symposium

Dr David Adlam, who is leading the UK SCAD research project attended the Second International FMD Research Network and SCAD Symposium held in Cleveland, USA on 18 and 19 May.

Some SCAD patients are also diagnosed with Fibromuscular Dysplasia (FMD), a rare connective tissue disorder, and the meeting brought together leading FMD and SCAD researchers, clinicians and patients to review current knowledge and research in the USA, Canada and Europe.

Dr Adlam said: “The meeting was attended by many of our key US and global SCAD partners: Dr Sharonne Hayes and Dr Marysia Tweet from the Mayo Clinic, Professor Jacqueline Saw from Vancouver, Professor Robert Graham from Australia, Dr Malissa Wood from Massachusetts General and Dr Esther Kim from Vanderbilt. Patient representatives included Katherine Leon from SCAD Alliance.

“Some of our friends from the European FMD world, including Professor Alexandre Persu and Dr Nabila Bouatia-Naji, were also there, as well as the leaders in the field from the US.”

The SCAD sessions included a presentation from Dr Adlam: “I spoke about the UK and European SCAD research and education programme, which was well received. It was an excellent meeting.”

He added: “There was some very interesting work presented by the FMD research groups of potentially direct application to SCAD and some important collaborative discussions.”

“We had a fantastic working group on exercise in SCAD survivors, with the main take-home messages being to encourage cardiac rehabilitation and avoid excessive restrictions perhaps retaining an advisory against ‘extremes’ of exercise.”

The symposium also included presentations in which patients talked about SCAD and FMD from their perspectives.

We look forward to hearing more over the coming months.

David Adlam at FMD-SCAD symposium

Dr David Adlam presenting at the symposium.

Thanks to Pam Mace at the Fibromuscular Dysplasia Society of America for the photo. For more information on FMD please visit the FMDSA at www.fmdsa.org.

British Cardiovascular Society journal Heart features SCAD article by Leicester research team

British Cardiovascular Society journal Heart features SCAD article by Leicester research team

UK SCAD researchers Dr David Adlam (pictured above left) and Dr Abtehale Al-Hussaini (pictured above right) have had an article published in Heart, the official journal of the British Cardiovascular Society.

The educational article is also a BMJ Learning e-learning module, providing continuing education for healthcare professionals and students across the world.

Three main learning objectives focus on the patient profile and that despite historical descriptions primarily in the context of pregnancy, approximately 90% of cases are not related to pregnancy; the lack of a visible dissection flap; and the key treatment challenges.

The article covers potential associations, including emotional stress, connective tissue, autoimmune and inflammatory disorders and exercise. Management of SCAD, including stents, bypass surgery and medication such as antiplatelet and anticoagulant therapies are described, as is the risk of recurrence, exercise and post-SCAD pregnancy.

Rebecca Breslin, Chair of Beat SCAD, said: “I’m really happy to see this educational article published. Raising awareness of SCAD among medics is essential and this learning module is a great step in that process. Dave and Abi work tirelessly on the SCAD project. We’re extremely fortunate and grateful to have them working to advance understanding of SCAD.”

The UK SCAD research project was initiated by the patient group and to date around 120 patients have been seen at the research days.

Rare Disease Day focus on SCAD Research gains BBC and ITV coverage

Rare Disease Day focus on SCAD Research gains BBC and ITV coverage

Rebecca Breslin and ITV film crew at Glenfield Hospital

Tuesday 28 February 2017 was the tenth edition of Rare Disease Day and saw thousands of people from all over the world come together to advocate for more research on rare diseases. Many events were registered, including our ‘Scones for SCAD’ event.

Rare Disease Day is an opportunity to:

  • raise awareness of rare diseases;
  • call upon important stakeholders including researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community;
  • recognise the crucial role that patients play in research.

The SCAD community have a fantastic relationship with the Leicester research team at the NIHR Leicester Cardiovascular Biomedical Research Unit (LCBRU) in the BHF Cardiovascular Research Centre at Glenfield Hospital. Patients and researchers are working together as a formidable team, pushing forward to understand this life-changing and potentially devastating condition.

To highlight the SCAD research and patient-researcher relationship, Beat SCAD and NIHR LCBRU hosted a day of awareness and fundraising at Glenfield Hospital. Members of the SCAD community kindly shared their stories and gained some fantastic media coverage.

The day began with an important feature on the BBC Victoria Derbyshire show: Young Women who survive heart attacks.

Firstly, the story of SCAD Survivor Nicki Owen was shared by the BBC whilst Nicki attended Glenfield for her first SCAD Clinic appointment.

Nicki (pictured third from left, below) said: “I came away feeling validated, listened to, cared for. It was a brilliant day all round.”

Rebecca Breslin (left), Nicki Owen (third from left) and ITV film crew at Glenfield Hospital

Two more SCAD Survivors featured on the live programme: Kate Alderton was interviewed in the studio and Catherine Beck remotely via video link.

Kate described her experience from March 2014: “I ran a 10K race the day before, but that was nothing unusual… In hindsight, I had the classic heart attack symptoms but you don’t expect that at 30… I thought I had a chest infection… The paramedics initially thought I was having an anxiety attack but an ECG showed some abnormalities.”

Catherine (pictured second from right, below) was 9 months pregnant when she suffered a SCAD 18 years ago. When Catherine started to feel unwell one morning, she explains: “Instinct kicked in that I just needed to get to hospital but I was just looked on as a lady who was going into labour. I had vice-like chest pain and became very unwell after being sent to the maternity ward. An ECG showed my heart was in trouble. The medics didn’t quite know what to do with my pregnancy but I had an emergency caesarean and fortunately Harry was born fit and well.”

(l to r) Rebecca Breslin, Dr Abi Al-Hussaini (SCAD researcher), Catherine Beck, Fiona Bailey (Orange Juice Communications) at Glenfield Hospital

Cardiologist and Lead SCAD Researcher in Leicester, Dr David Adlam was also interviewed remotely. He began: “Like a lot of rare diseases, this condition is often under-recognised and diagnosis can sometimes be delayed. One of the things we are trying to do on Rare Disease Day is raise awareness of Spontaneous Coronary Artery Dissection and the research we are doing into it.”

Dr Adlam (pictured below with Beat SCAD Chair Rebecca Breslin) explained how SCAD is a bruise within the wall of a coronary artery which compresses the artery causing a blockage which leads to a heart attack, rather than being an atherosclerotic plaque associated with inflammation and cholesterol which causes a conventional heart attack.

Dr Adlam continued: “SCAD is a very different cause for a heart attack and as a result it is very important to recognise and identify patients who are rather different than the patients we usually see presenting with heart problems.”

Rebecca Breslin, Dr David Adlam (lead researcher) at Glenfield Hospital

Victoria Derbyshire asked Kate and Catherine to describe the impact SCAD has had on their lives.

Kate explained: “It has had a huge impact on my life. I think about it happening again every day. I do feel a lot more tired as I have quite a bit of damage – I think because I left it so long to get help… Finding a ‘new normal’ summarises it quite well… Gaining confidence again in your body when you have lost that.”

Catherine: “It is a condition I have to manage every day but I am careful, I go to the gym and I look after my health, I make sure I am resting enough. I live as normal a life as possible.”

Later in the day, Kate was interviewed by her local radio station.

Beat SCAD stand
SCAD survivors

The Beat SCAD event at Glenfield Hospital included:

  • Information stand in the main reception with leaflets about SCAD and Rare Disease Day
  • ‘Scones for SCAD’ bake sale which raised £125
  • Research participants undergoing study assessments
  • Live Tweeting of the research experience
  • NHS SCAD Clinic patient appointments
  • SCAD patients meeting other survivors (Yes, docs – this happens!)

The NIHR and BHF funded research has given great hope to the SCAD community. Approximately 120 SCAD survivors have already been assessed, their data collected and under analysis but there are hundreds more people registered who are desperate to participate in this quest for answers.

Beat SCAD stand

Research days

Samantha Roberts (pictured below left with Rebecca Breslin and Alex Mortimer) was one of two SCAD Survivors to undergo her research day as part of the Rare Disease Day event. Sam was attending Glenfield on the eve of her fifth ‘SCADiversary’. She said: “It was a productive day… lovely to see Dr Abi and Dr Adlam… and great to meet up with other fellow SCADsters… I’m glad and lucky to be part of the picture to further understanding.”

An ITV News crew filmed aspects of the event and interviewed researchers Dr Adlam and Dr Abi Al-Hussaini, SCAD survivor and research participant Alex Mortimer and Beat SCAD Chair Rebecca Breslin. Watch the feature here.

(l to r) SCAD survivors Sam Roberts, Rebecca Breslin and Alex Mortimer
Dr Abi Al-Hussaini and Alex Mortimer being filmed by ITV

Rebecca said: “Each time SCAD has featured in national media like the recent BBC and ITV coverage, we have managed to reach new members of the SCAD community: either patients with a SCAD diagnosis but otherwise limited information who have been feeling very isolated; or heart attack survivors without any understanding of why they had a heart attack who, upon learning about SCAD, suspect they fit the profile and will now ask their doctors about it. No doubt, there are more people like this that we need to reach. It is vital that we achieve that.”

Rebecca added: “It was a very enjoyable and successful day. There was a lot of interest from the public and I was able to meet a few more members of our group. I extend an enormous thank you to the Fundraising Department at University Hospitals of Leicester and to Martin Batty (BRU Manager) for permitting the event, to Fiona Bailey for her excellent PR work, and to all who helped make the day happen.”

Of course, even more awareness and funding are required to find the answers… And you can help us now with raising awareness.

CALL TO ACTION

Help us reach people by sharing information:

  • Direct your GP and other medics to our website and YouTube channel – ask them to talk to their colleagues about SCAD
  • Ask your family and friends to do the same
  • Share information far and wide via social media
  • Share your story – whether a survivor, a carer, or family member – on our website (contactus@beatscad.org.uk), contact your local newspaper, magazines, TV/radio etc.

Let’s make noise about SCAD!

Let's beat SCAD!