EFNA Advocacy Awards 2018

On the evening of Tuesday, November 20th 2018, the European Federation of Neurological Associations held its third Advocacy Awards, at the Fondation Universitaire in Brussels.

These awards recognise the contribution of individuals or groups to the development and promotion of advocacy for people with neurological disorders in Europe. This year, to coincide with EFNA’s focus on young people, the awards were given to young advocates, under the following categories:

The categories are:

Young Health Professional/Researcher
Young Digital Advocate
Young Volunteer Advocate
Young Policy-Maker

The Award for Patient Advocacy by a: Young Health Professional/Researcher

Winner: Dr Giorgos K Sakkas

Dr Giorgos K Sakkas with Daragh Bogan (EARLS)

Nominated by: European Assiciation for Restless Legs Syndrome (EARLS)

Dr Sakkas has spent a lot of time on RLS research, and is known for his warmth and genuine interest in helping RLS patients. In recent years he participated actively in the Value of Treatment RLS study, thereby showing an active interest in the patient perspective. He also has recently spent a large amount of time writing a proposal to the EU for funding RLS research (COST project), which if accepted will mean that RLS research will have a great stride forwards – which is badly needed.

Dr. Sakkas is also someone who likes to think out of the box. An example of this is his attempt at developing special hypnosis exercises for RLS sufferers.

Finally, in 2017 Dr Sakkas did a major survey on RLS during pregnancy in collaboration with the UK, Dutch and Swedish Patient groups. RLS and pregnancy is a huge problem affecting one-third of all pregnant women.

The Award for Patient Advocacy by a: Young Digital Advocate

Winner: Poppy Ellis-Logan

Nominated by: ADHD Europe

In this category, the judges chose a young lady who has struggled all her life with ADHD and many other associated and complex neurological problems.

With a very supportive family and early diagnosis and treatment, this young lady managed to attain a place at the prestigious Cambridge University in the UK.

Whilst there, she became acutely aware of the lack of information and support for students with ADHD. This lead to her taking on the role of Welfare Rights Officer at the university, and was instrumental in developing instant messaging software for students with mental health problems to access high quality support.

After University, she was involved in many digital initiatives in her workplace; developing a broad range of IT skills along the way. This gave her the platform to develop a campaign called Attention UK. Here, she created a website – attentionuk.org – to highlight the problems facing adults with ADHD – supplemented by effective social media advocacy.

She has worked closely with the UK charity ADDISS and has also participated in ADHD Europe events bringing her expertise to a wider platform – and linking with more traditional patient organisations; offering her digital skills to help in their advocacy and awareness raising work.

Her enthusiasm and skills have been highly recognized and she is now a valued member of the Adult ADHD service in Barnet, London where she works as a graduate mental health worker supporting adults with neurodevelopmental disorders.

The Award for Patient Advocacy by a: Young Volunteer Advocate

Winner: Dr Ramona Moldovan

Nominated by: European Huntington Association (EHA)

Dr Ramona Moldovan, Astri Arnesen (EHA President) and Joke Jaarsma (EFNA President)

Ramona Moldovan is a young Romanian psychologist. Specialising in genetic counseling, she has paid particular attention to the unmet needs of Huntington families in Romania.

Ramona has shown a tremendous capacity and effort to improve the situation for those affected by HD in Romania. Since 2009 she has actively collaborated with European HD experts and HD associations and because of her tireless work, slowly but surely, Romanian families are being offered support and highly needed health services. From almost nothing there is now a team at the University hospital in Cluj offering a multi-disciplinary service. The team includes, along with Ramona, a neurologist, psychiatrist and geneticist. Ramona coordinates the work and does much of the follow-up to families as an unpaid volunteer.

In 2015 Ramona established the Romanian HD association. Through her European contacts Moldovan has been able to have an agreement to have genetic laboratory analyses done in Switzerland free of charge for Romanians. Before this, it was almost impossible for the average Romanian to afford a genetic test for HD. The latest action taken is arranging an HD week September 2018. Here HD patients and family members are invited to stay for 5 days in Cluj to have consultations with specialists, lessons about HD, support groups etc. All initiated and coordinated by Moldovan. The experts work as volunteers without any pay throughout the week.

The European Huntington Association is nominating Ramona Moldovan for not only her extraordinary ability to advocate for the needs of HD families, but also to take action. Everything she does has a high professional standard, deep humanity and understanding of the complex burdens of living with HD. The European Huntington Association (EHA) regard her efforts to be of special value since the needs of HD families in Romania had been almost completely unmet.

“It requires a lot of courage and optimism to start from scratch like Moldovan has done and the EFNA reward is very well deserved and a huge acknowledgement of her work.” Astri Arnesen, EHA President

The Award for Patient Advocacy by a: Young Policy-Maker

Winner: Jeroen Lenaers MEP

Nominated by: Pain Alliance Europe (PAE)

Jeroen Lenaers MEP has been nominated by PAE for this work as a co-chair of the MEP Interest Group on Brain, Mind and Pain – where he has been actively involved and supported the group with tabling legislative amendments, coordinating the campaign for a Written Declaration, asking parliamentary questions and hosting meetings.

Lifetime Achievement Award

Winner: Prof. Wolfgang Oertel

For the first time EFNA presented the special achievement award to a scientist. With the scientific and patient communities working together more closely, the EFNA Board felt this would be timely. The award this year goes to Professor Wolfgang Oertel of Germany, in gratitude for his broad and multifaceted career in neurology. Professor Oertel was part of a few seminal discoveries and performed instrumental work in movement disorders. For this magnificent model career he was awarded the Hertie Sr professorship, the most prestigious award in Germany. Professor Oertel’s broad vision on science, his tireless work in the European insitutions, all combined with an active interest in neurological patient advocacy, make this award a special one.

A high-level judging panel assessed all nominations. This year’s judges are: