RESEARCH
PAPERS.
Below you will find a selection of open access scientific papers supported by funding from Max’s Foundation; recent articles about us; and more.
Reference list (scientific papers)
Lorenzini et al., 2020; Penetrance of Hypertrophic Cardiomyopathy in Sarcomere Protein Mutation Carriers; Journal of the American College of Cardiology; 76(5) ;p550-559
Dr Juan Kaski, our ambassador, and Ella Field, the research nurse funded by Max’s Foundation, are both authors on this paper aiming to determine the incidence of HCM in patients carrying mutations in sarcomere protein genes.
Norrish G et al. 2019; A validation study of the European Society of Cardiology Guidelines for risk stratification of sudden cardiac death in childhood hypertrophic cardiomyopathy; Europace; 21 (10): 1559-1565
This study assessed the current European Society of Cardiology guidelines’ ability to discriminate between paediatric patients with HCM who are high-risk and low-risk for sudden cardiac death. This paper was co-authored by Ella Field and Dr Juan Kaski, who were supported by Max’s Foundation.
Norrish G et al. 2021; Childhood Hypertrophic Cardiomyopathy: A disease of the cardiac sarcomere; Frontiers in Paediatrics; 9
A review paper on the current knowledge of sarcomeric childhood HCM discussing the variability of the disease and unanswered questions, co-authored by Dr Juan Kaski and Ella Field who were supported by Max’s Foundation.
Norrish G et al. 2019; Development of a Novel Risk Prediction model for Sudden Cardiac Death in childhood Hypertrophic Cardiomyopathy (HCM Risk-Kids); JAMA Cardiology;4 (9): 918-927.
Ella Field, a research nurse whose position is funded by Max’s Foundation, was involved with the development of a new model to help predict for sudden cardiac death in young children with hypertrophic cardiomyopathy. This model may provide individualised estimates of risk in children as young as 5 years old.​
Norrish G et al. 2019; Clinical presentation and survival of childhood hypertrophic cardiomyopathy: a retrospective study in United Kingdom; European Heart Journal;40(12): p986-993
This study describes the clinical characteristics and outcomes of childhood HCM over four decades in a group of 687 paediatric patients (age 0-16) in the United Kingdom. This paper was co-authored by Ella Field and Dr Juan Kaski, who were supported by Max’s Foundation.
Reference list (news articles)
BBC News. Birmingham Student researches illness that killed brother; 2021.
In 2021, Max’s sister and trustee of Max’s Foundation, Molly, completed a Master’s research project investigating the genetic causes of hypertrophic cardiomyopathy. After a tweet about this project went viral on Twitter, Molly spoke to several news agencies about HCM – raising awareness for Max’s story, the condition, and our charity.
Mirror. Sister who lost ‘kindest’ brother, 10, to rare condition fights to save others same pain; 2021
In 2021, Max’s sister and trustee of Max’s Foundation, Molly, completed a Master’s research project investigating the genetic causes of hypertrophic cardiomyopathy. After a tweet about this project went viral on Twitter, Molly spoke to several news agencies about HCM – raising awareness for Max’s story, the condition, and our charity.
ITV News. Student studies heart condition that killed ‘ray of sunshine’ young brother; 2021.
In 2021, Max’s sister and trustee of Max’s Foundation, Molly, completed a Master’s research project investigating the genetic causes of hypertrophic cardiomyopathy. After a tweet about this project went viral on Twitter, Molly spoke to several news agencies about HCM – raising awareness for Max’s story, the condition, and our charity.
Fakenham Times. PE teacher to walk Norfolk Coast in aid of grandad and pupil; 2021.
In 2021, Alex Wadpole walked roughly 83 miles in aid of Max’s Foundation and Parkinson’s UK. You can read more about his story here.​
Newsweek. ‘I hope you’d be proud of me, Max’: Woman submits dissertation on illness that took her little brother’s life; 2021
In 2021, Max’s sister and trustee of Max’s Foundation, Molly, completed a Master’s research project investigating the genetic causes of hypertrophic cardiomyopathy. After a tweet about this project went viral on Twitter, Molly spoke to several news agencies about HCM – raising awareness for Max’s story, the condition, and our charity.
Oxford Mail. Didcot Heart Warrior family raise funds for Max’s Foundation; 2018.
Our long-time supporters, the Preston family, completed a 200-mile bike ride and half-marathon in aid of Max’s Foundation in 2018. Their son, Henry, was diagnosed with HCM, and is receiving care at GOSH.
Reference list (other/miscellaneous)
Sibling Support. Molly researches condition that her brother died from; 2021
GOSH. Predicting Sudden Cardiac Death in Children; 2019.
GOSH. Kai’s story: one of the first patients to be treated at the Zayed Centre for Research; 2019.
Sibling support are a fantastic charity made by siblings, for siblings. Their aim is to support all siblings who have been affected by the death of a brother or sister. In 2021, Max’s sister and trustee Molly shared her story with Sibling Support.
Max’s Foundation supported a project at Great Ormond Street Hospital to develop a new risk prediction model for Sudden Cardiac Death in young children with hypertrophic cardiomyopathy. Read more about the project here and find out how it can help children like Kulthumi.
Read about Kai’s story, a child who was diagnosed with HCM and received a donor heart in 2019, and how the work Max’s Foundation supports can help children like him.