We need you!
We are delighted to be able to share our new MCAS experiences questionnaire. The results of this survey will be used to help build a summary of the similarities often experienced in the journey to an MCAS diagnosis and help to demonstrate the need for better care for those living with MCAS.
This questionnaire has been developed by Mast Cell Action in conjunction with medical professionals. We would especially like to thank Dr Jöse Costa, Consultant Paediatrician, for his support with this work. Dr Costa has shown considerable commitment to the development of this questionnaire, without whom this project would not have been possible.
The results will be published and made available on our website once completed. We expect this questionnaire to take around 30-60 minutes to complete. You can complete the questionnaire online here. If you would prefer to download it, please click here.
If you choose to download it, please return the completed questionnaire to firstname.lastname@example.org. You can also contact Lauren with any questions.
We are delighted to welcome Charise Clarke to our team as our new Community Engagement Coordinator. Charise will be working closely with our community to develop support, services and resources in the coming months.
Charise has always been drawn to helping others. For nine years she worked in the community as a support worker supporting adults with learning difficulties, mental health issues and physical disabilities. She then worked with children as a tutor, TA and Science workshop facilitator before going into recruitment and eventually volunteer management.
She has a degree in English Literature and Creative Writing, a Health and Social Care Diploma and an NVQ in Leadership and Management. Charise is very creative and plays guitar, sings, writes poetry and stories and makes art. She also converted her van into a campervan and has a Staffy girl called Betty.
We are delighted that this work has been made possible thanks to a National Lottery multi-year grant.
Together we can make amazing things happen! Mast Cell Action has signed up to the unity lottery! Unity is the nation's fundraising lottery platform. It's designed to give good causes the chance to raise money through a weekly lottery. When you join a lottery using the Unity platform, at least 50p of every £1 you play goes to your chosen cause. The remaining 50p is used by the platform to provide prizes and cover administration.
How to play
Mastocytosis & Mast Cell Disease Awareness Day falls on Friday 20th October and this year we are turning the world purple, one t-shirt at a time! For the first year ever, you can raise awareness and help those affected by MCAS as 25% of all purchases will be donated to Mast Cell Action to directly support the MCAS community. Order your t-shirts here!
No matter how you choose to mark awareness day this year, please do send us your photos!
To receive your t-shirt in time, please order no later than 12pm Friday 13th October and select 24hr tracked postage. Orders after this date will not be completed in time for the awareness day.
We are thrilled to announce that Mast Cell Action has been awarded a generous £174k multi-year grant to support our community engagement work!
This incredible funding will enable us to expand our efforts in raising awareness and providing support for those affected by mast cell disorders.
None of this would be possible without the support of our amazing community and the dedication of our team. Thank you all for being a part of this journey!
Stay tuned for exciting updates as we embark on this new chapter. Together, we can make a real difference in the lives of those affected by mast cell disorders.
October 20th is Mastocytosis and Mast Cell Disease Awareness Day. Can you help us to raise awareness?
How can you get involved? Simply contact local landmarks and ask them to go purple for the day to put MCAS in the limelight.
If they say yes, get in touch with email@example.com for support with getting featured on your local news.
Together we can shine a light on MCAS.
Our brand new Medical Engagement Team were recruited in July and came together for the first time in September to begin their planning for our medical engagement work.
This is the beginning of our new team, and we are already focussed on the additional members of the team that we need to recruit to strengthen the team even further.
Lauren, Ade and Sherrin began the planning for our work in this area and presented their plans to our Trustee board.
Read more about them here.
We are delighted to have them all onboard and can't wait to share their work with you once they are fully settled in!
Our MCAS Moments campaign, created by Mast Cell Action volunteer - Jillian Shields with artwork by Mast Cell Action volunteer Katrin, is a finalist at the 2023 CIM Global Marketing Excellence Awards!
Shared across our Instagram, Twitter and Facebook platforms, our MCAS Moments campaign shares a series of moments in life with MCAS, to help us to connect with others experiencing similar moments and to raise awareness among the wider population of what these moments can be like for people living with MCAS.
We hope this helps us to get the message out about MCAS and raise awareness even further.
Thank you Jillian and Katrin for bringing such an important campaign to life.
In June, we were delighted to hold our first MCAS webinar with Dr Bethan Myers MCAS Specialist Dietitian, Chloe Hall.
Many Healthcare providers came along for an introduction to MCAS and expert guidance from our guest speakers.
Thank you to Dr Myers and Chloe for giving up their time to support the session and help us to share knowledge with others.
There were lots of questions at the end of the session which we will be developing into a Q&A for our website. Watch this space for further details!
If you missed this session, don't worry - you can still view it on our YouTube channel here.
We are delighted to have been asked to present to multiple groups recently including Norfolk and Dorset Long Covid Multi-disciplinary teams, a group of dietitians interested in MCAS, and the Stockport ME support group.
With nearly 200 people attending these presentations, we are delighted to have had the opportunity to raise awareness and share knowledge about MCAS and hope to be able to continue to expand on this work in coming months.
If you are part of a team who would benefit from a presentation about MCAS, please do get in touch so that we can create something for you.
We held community information sessions for people affected by MCAS in May and July. This introductory session provided a thorough insight into Mast Cell Activation Syndrome (MCAS) and managing triggers and symptoms.
Thank you to Chloe Hall, who shared her top tips on how to manage a low histamine diet and cope with the food restrictions often associated with MCAS.
If you missed the session, you can catch up by viewing it on our YouTube channel here.
We are regularly contacted by people looking for support with advocacy.
In order to maximise the support we can offer in this area, we recently presented to Advocacy Focus, a charity that provides high-quality advocacy services across the North-West of England. This session was designed to share information about MCAS and help attendees to understand the difficulties often faced by those living with MCAS.
This presentation was recorded and we intend to work with other advocacy charities to raise awareness across the UK. If you are an advocacy group interested in learning more about MCAS, please get in touch for further information.
Dr Bethan Myers recently presented at the PoTS Masterclass Conference on behalf of Mast Cell Action sharing that; based on a small sample of survey respondents, MCAS appears to be a condition that overlaps with a diagnosis of Long Covid (and PoTS). We hope that we will learn more about this link with time and research.
This year's annual immunology conference (The BSACI) coincided with the world allergy conference… so it was a great opportunity for the charity to not only meet UK based medical professionals but also engage with doctors and researchers from around the world.
Gawain and Isaac, a junior doctor doing an internship with the charity, manned the stand and spoke to many different specialists, distributing our literature on MCAS and sharing patient stories. We told people about Mast Cell Actions activities and recruited more supportive doctors!
We attended the BSACI annual congress in Harrogate to raise awareness. We spoke to doctors, nurses, dieticians, and other healthcare professionals about MCAS, and shared educational materials and wellbeing resources to help support people affected by MCAS.
This was a great opportunity to give out literature and engage with healthcare professionals.
We are delighted to share that we have been awarded a National Lottery Awards for All grant to create a self-management resource for people living with MCAS.
The pack will include symptom logs and guidance sheets to help individuals to manage the complex triggers often associated with MCAS and will be available to download for free from our website.
We can’t wait to be able to share this with you!
Thank you to the players of The National Lottery!
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Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.