The inaugural EFNA Advocacy Awards took place on the evening of Tuesday October 13th at the Thon Hotel in Brussels, Belgium. The night was hosted by Nick Ross, Broadcaster and Journalist, and also facilitated by Audrey Craven, Past-President at EFNA.
The Awards provided an opportunity to recognise some of the excellent efforts made by particular individuals to better the lives of many living with neurological disorders in Europe.
Policymaker Award Winner: Gay Mitchell
The first award of the evening was our Policymaker award. The judge in this category was International Health Policy Advisor and former Irish Health Minister Mary Harney. The nominating organisation was The International Bureau for Epilepsy whose Executive Director, Ann Little had the pleasure of introducing the award to Former MEP, Gay Mitchell.
Ann explained that The International Bureau for Epilepsy nominated Gay Mitchell, for the Policymaker award, on foot of his consistent and dedicated campaigning for people with epilepsy in the European Parliament for more than 10 years.
Gay Mitchell opened doors for us in Europe, and provided us with direction, which have been instrumental in raising epilepsy on the political agenda.
He launched the first European Epilepsy Day in the European Parliament in 2011 and hosted the event until retirement from politics. He created the European Advocates for Epilepsy MEP Group in 2011, which submitted a Written Declaration on Epilepsy that achieved one of the highest ever number of MEP signatures.
Thanks to the exposure that epilepsy received from these activities, research on epilepsy was defined as a priority in the final FP7 Call in 2012. On retirement from politics, Mr Mitchell joined Epilepsy Advocacy Europe – the task force that coordinates IBE’s EU-related activities.
Health Professional Award Winner: Prof. Cristina Tassorelli
The award for Health Professional was judged by David Vodušek, Chair of the Liaison Committee of the European Academy of Neurology. The nominating organisation were the European Headache Alliance, whose President Audrey Craven had the honour of presenting the award to Professor Cristina Tassorelli.
Prof. Cristina Tassorelli served voluntarily as Medical Advisor for 9 years to the European Headache Alliance of which she was a founder member.
Throughout all these years her clinical and research work has benefited countless patients and so many others affected by headache disorders. Her genuine passion and commitment in her role as a Neurologist with a special interest in headache disorders, has served both the scientific and patient community well and she has worked tirelessly to bring together stakeholders from scientific, industry and patient groups. She has demonstrated great awareness of the importance of having evidence based data to influence those ordering priorities to advocate for more resources whilst ensuring the patient perspective is respected.
Media Award Winner: Jeroen de Schepper
Mary Lynne Van Poelgeest-Pomfret, Patient Advocate and Chair, European Platform for Patient Organisations, Science and Industry [EPPOSI] judged the Media category of the EFNA Advocacy Awards 2015 and was most impressed by the candidate put forward by the European Huntington Association (EHA).
The EHA nominated Jeroen de Schepper for this award because he succeeded in raising awareness through the media of a very serious neurological disorder – Huntington’s disease.
In Belgium he held a press conference in cooperation with Prof. Ann De Paepe, Rector of the University of Ghent and was featured on the VRT’s main news programme – as well as on different local TV channels, newspapers and radio stations.
His ‘crosscountry4huntington’ initiative was not just profiled by the Belgian media but also by media outlets all across Europe. He travelled throughout the continent by bike: cycling over 12,000km in four months.
In each country he visited, he met either families affected by Huntington’s Disease or called to nursing home and local Huntington Associations. These meetings were reported on by TV, radio and newspapers in each country. He also kept a blog to report on his trip which was read by many people.
All of this raised so much awareness and understanding of Huntington’s Disease and not just from amongst those affected by HD, their family and caregivers, and health professionals – but also with the general public.
According to Jeroen:
I don’t have the time to tell all the stories off my trip but one year later the story still continues. Together with my girlfriend we crossed Bulgaria by bike from the Black Sea to Sofia. The recognition for the disease in Eastern Europe is non-existent. The
President of the new Bulgarian Huntington Association invited us to draw attention. She is trying to make the government recognize the disease. We ended the trip with more media than we expected and hope it is another step towards the recognition.
But there is still a lot of work and I’m happy that I could contribute.
Patient Advocate Winner: Shana Pezaro
European Multiple Sclerosis Platform (EMSP) were the nominating organisation for the Patient Advocate award, which was judged by Nicola Bedlington Executive Director, European Patients Forum [EPF]. As Nicola could not be with us on the evening she was represented by her colleague Camille Bullot.
Maggie Alexander, Executive Director of EMSP was delighted to annouce Shana Pezaro the winner of this award.
Shana is 36 and has Intermittent Relapsing MS. She was finally diagnosed eight years ago but has had MS since childhood. Shana sold her business during diagnosis, was signed off work permanently and divorced due to the pressure MS placed on her marriage. With emotional and practical support from her MS Nurse, Neuro-Rehabilitation Team, Physios and Fatigue Management OTs, Shana has been able to rebuild her life. She is now dedicated to helping other people with MS to do the same.
She has become a Trustee for the Brighton & Hove Federation Centre For Independent Living and works voluntarily with the Campaigns, Press and PR departments of the National MS Society and EMSP. Shana also politically campaigns around health, welfare and social care reform on a local and national level and has many successes in implementing policy change.
She is involved in initiatives both in the UK and with EMSP in Europe to support disabled people to maintain paid employment. Shana has won the UK MS Society’s ‘National Campaigner Award’ and the ‘National Olympic Champions Community Award’. Shana organises social events for young people with MS and has run a very popular pub-afternoon event for the past 6 years in Brighton. Slixy Shana is particularly interested in the impact of MS and disability on sexuality and self-esteem. She has also generated a lot of positive national press and media around disability and exercise.
“EMSP is fortunate to work closely with many outstanding patient advocates and they are at the heart of everything we do. However, Shana is really exceptional not only for her energetic and persistent lobbying on behalf of people with MS (despite the frequent bouts of acute fatigue and mobility restrictions imposed by her condition), but also for her ability to change the hearts and minds of key decision-makers, healthcare professionals and funders. Shana achieves this by uniquely combining disarmingly candid accounts of the impact of her condition with highly informed experience and evidence in support of her arguments for greater health equality for all those affected. This, together with her pioneering work with young people affected by MS is the reason for EMSP’s unequivocal support for Shana to receive this excellent new award.”