About Us

We are MORCure.

At MORCure, we believe that no child should have to live a tough life because of a rare disease that can’t be cured.

‘Cure’ is not a pill nor an easy remedy. To truly CURE, we must do MORE which involves radical change to every aspect of the care journey starting from getting the right diagnosis, medications and non-pharmacologic interventions to designing a therapy that could change the origin of a genetic disorder.

We are the only global charity that leads research, innovation and best practice for individuals with MORC2-Related Disorder.

We are scientists, doctors, industry partners, medical professionals and caregivers who are all here to bring MORE to individuals suffering with MORC2-Related Disorder, and MORE hope to the many families currently being left in the dark. 

Our Story

MORCure is a family-led foundation, co-founded by Anna-mai Andrews and her sisters Lara Cubison and Sarah Moyle. Anna-mai’s daughter Amber was diagnosed with MORC2-Related-Disorder (also called M2RD or CMT2Z) at 2 years of age following over a year of repeated hospitalisations. Amber is now 4 years old and is unable to walk independently. She suffers from tremors caused by damage to her nervous system and struggles to balance due to damage in parts of her brain. Like many other children diagnosed with M2RD, Amber wears splints on her legs throughout the day and night and undergoes experimental therapies to try and improve her quality of life. 

As with many parents who have a child with a rare disorder, the journey in obtaining a diagnosis for Amber was lonely and difficult. For years, Amber’s parents were told there was nothing wrong with their child, that Amber’s mother suffered from anxiety, and that Amber would just ‘grow out of it’. Before being diagnosed with MORC2-Related Disorder,  Amber went through many invasive tests and received a number of incorrect and worrying diagnoses.

The diagnosis of MORC2-Related-Disorder (M2RD) was finally confirmed after Amber had a blood test called whole genome sequencing. M2RD is a complex neuromuscular genetic disorder which is a result of a mutation in the MORC2 gene. After receiving Amber’s diagnosis, it was clearly evident to her parents that there were no resources available for patients and caregivers. Additionally, there were very few health professionals with knowledge of M2RD, making treatment and management plans difficult. There was no robust, evidence-based information available for M2RD.  Determined that no families should have to go through this level of suffering and confusion, MORCure was established.

Our goals at MORCure are to help families advocate for their children, help doctors understand how to diagnose and treat M2RD and to help scientists advance medical breakthroughs on our quest to cure M2RD. On our journey, we aim to advance our general understanding of the gene, including its critical role in cancers. 

Our Strategy

Globally, millions of children are living tough lives because of rare genetic diseases that are poorly understood. Through advocacy, research funding and education on diagnosis through whole genome sequencing,, we are changing the lives of children and advancing humanity’s understanding of what this gene does in all people. 

MORC2-related Disorder (M2RD also known as CMT2Z) is a rare genetic disorder that affects children and adults. M2RD is becoming increasingly recognised through the use of whole genome sequencing, although access to this is often limited.  M2RD is a complex spectrum disorder with variable clinical presentations.  M2RD presents with a range of symptoms including difficulty mobilising, muscle weakness and contractures, and developmental delay. Research on M2RD is limited and the progression of this disorder is not yet fully understood. 

At MORCure, we are committed to increasing patient access to information, empowering families, and funding innovative research that may one day drive the creation of a genetic therapy as well as help scientists solve other related conditions, such as the role of MORC2 in cancer. MORCure strives to find solutions for people living with M2RD and their families along the entire medical journey, from getting the right diagnosis, medications and therapies, to creating a novel gene therapy. By partnering with scientists, healthcare professionals, companies, and patients and their families, we commit to finding cures together for children suffering with M2RD.

Our core pillars

  1. Increase the visibility of MORC2-Related Disorder for patients, healthcare providers, researchers and caregivers via education, outreach and collaboration with universities and governments.

  2. Establish international treatment and diagnosis guidelines to improve the day to day lives of individual children.

  3. Drive innovation in diagnosis, treatment and development of novel therapies through the funding of research.

  4. Act as a network hub to connect patients with experts and research opportunities.

  5. Represent patients’ interests to medical, research, government and other charitable organizations on MORC2-Related Disorder to achieve scientific advancement.