Public Service Award
The Public Service Award recognizes an individual or organization that exhibits the highest standard of excellence, dedication, and accomplishment in public engagement within the field of Movement Disorders working toward public outreach and patient betterment.
The 2023 MDS Public Service Awardee is bestowed upon Ginger Irvine for her work on behalf Advocacy for Neuroacanthocytosis Patients (NA Advocacy), in London, United Kingdom.
”I am honoured and grateful to receive the 2023 Movement Disorder Society (MDS) Public Service Award on behalf of the Advocacy for Neuroacanthocytosis Patients (NA Advocacy). MDS was a kind supporter of a number of our Symposia.
The neuroacanthocytosis (NA) patients are likely diagnosed with either VPS13A syndrome (most commonly known as Chorea-acanthocytosis) or XK syndrome (most commonly known as McLeod disease). The two conditions are extremely similar, with the difference being in the age of manifestation and the gender distribution. The most common symptoms are uncontrolled muscle movements such as involuntary twisting, facial tics, biting of tongue, cheek and lips; unsteady gait, muscle weakness and/or atrophy; seizures; slurred speech or inability to speak; and/or cognitive difficulties such as impaired memory.
My husband Glenn and I were introduced to a field of endeavour we never expected to enter when our daughter, Alex, started to manifest symptoms around the mid-90s. There was very little knowledge back then and the journey to diagnosis lasted four years. With neither of us having a medical background, our experiences over the past 25 years have brought new knowledge and understanding and a whole lot of respect for the wider medical world globally.
We partnered with Dr. Adrian Danek in Munich to develop the first International Symposium for NA syndromes in 2002 in Seeon, Germany. Since then, the Symposium takes place biennially and from the eighth edition in 2016, has been open to patients, their families and carers.
The pandemic saw new challenges (delay by one year to 2021) but also some opportunities for our community, including the tenth (and first virtual) Symposium. And this year, on 15 September we are pleased to reunite again in person, in Germany for the 11th edition, with a packed agenda of scientific presentations and posters, as well as sessions involving the patients, their families and carers.
It was in 2009 when we founded NA Advocacy as a registered charity. With the help and support of many, for which we are very grateful, we are pleased to have been able to award grants which contributed to advancing the research into the NA syndromes.
We are committed to encouraging and supporting research further, and to continue the work of my late husband, we founded the Glenn Irvine prize in 2020, kindly supported by two of our long-term contributors. This is awarded to young scientists with a research interest in NA syndromes.
We consider ourselves very fortunate to have the chance to work with all the clinicians and researchers who are heading the labs and projects which will lead to better treatments and possibly cures for these rare movement disorders.
Spreading the word, sharing patients’ stories and ideas, and enabling meetings to bring the experts together has made it possible for us to present a united front to the world."