Paul Holmes 06 May 2005 // 11:00PM GMT
Often misunderstood and misdiagnosed, dystonia is the third most common neurological movement disorder after Parkinson¡¯s disease. It is a debilitating disorder that often affects those who rely on fine motor skills such as classical musicians and surgeons, yet awareness of the condition is still extremely limited. It is characterised by involuntary muscle contractions which force certain parts of the body into abnormal, sometimes painful, movements or positions.
Despite its negative impact on sufferers (which was reinforced by a recent patient survey), the condition continues to go unrecognised.
Last year, to celebrate his return to two-handed playing, dystonia sufferer Maestro Leon Fleisher, together with the Dystonia Medical Research Foundation (DMRF), European Dystonia Foundation (EDF) and Chandler Chicco Agency (CCA), rolled out Freedom to Play, an international educational campaign to raise awareness of the need for proper diagnosis and treatment of dystonia.
The campaign had several objectives:
¡Æ To educate the general population about dystonia and encourage those suffering to seek help from a specialist to obtain proper diagnosis and treatment
¡Æ To educate primary healthcare professionals about the impact of dystonia and potential treatments; drive referrals to specialists
¡Æ To motivate people to contact the DMRF and EDF as important resources for information.
In an effort to raise awareness about a little known, often misdiagnosed and under treated neurological movement disorder, the DMRF sought the help of Chandler Chicco Agency (CCA) to improve the recognition of the condition, inform people about available resources and encourage those suffering to seek help from a specialist and obtain proper diagnosis and treatment. It was a considerable challenge to generate media interest surrounding dystonia since many journalists were not familiar with the condition and its impact on human lives.
To generate attention, we needed to humanise the condition in a dramatic way; Maestro Fleisher provided the perfect example of both the debilitating effects of dystonia as well as the extraordinary results of accurate diagnosis and treatment.
Three DMRF events took place, each presenting an opportunity to capture the attention of the media. It was essential to ensure that momentum was not lost in between events so that the media were kept waiting in anticipation of the next release. This was achieved by feeding feature stories throughout the year based on dystonia case studies in real life situations so that journalists remained interested in the condition and recognised the importance of the Freedom to Play campaign.
The challenge was to ensure the focus was not only on Maestro Fleisher¡¯s personal achievements but also on his battle to overcome the debilitating condition of dystonia, including an accurate description of its symptoms, treatments and patient resources.
Research efforts identified Maestro Leon Fleisher, a world renowned classical musician and three-time Grammy-nominee who recently overcame the challenges of dystonia. Fleisher battled focal dystonia ¨C which resulted in the involuntary curling under of two fingers on his left hand ¨C for more than 35 years, a period during which he was relegated to performing with only his left hand. Through the implementation of treatment advances at the National Institute of Health (NIH), Fleisher has recently resumed the ability to perform with both hands, which he characterises with great emotion:
¡°The tension in my muscles that had been contracted all this time began to dissipate and the sensation was of the fingers reassuming their normal length again instead of being clenched. I was able to put them on the keyboard and they were able to remain unclenched, extended on the keys. It¡¯s pretty indescribable ¡ that sense of joy to be able to connect with that instrument from which I had been disconnected for so long.¡±
Fleisher embodied hope for dystonia sufferers worldwide; he was able to overcome the challenges of the disorder after being properly diagnosed and treated. Together with the DMRF¡¯s Musicians with Dystonia group, and EDF, CCA celebrated Fleisher¡¯s comeback by launching and rolling out Freedom to Play, an educational initiative aimed at encouraging people worldwide with dystonia to seek help from a movement disorder specialist who can properly diagnose and treat the condition. In addition we wanted health care professionals, particularly those who are the first point of contact for potential sufferers, to recognise the symptoms and impact of dystonia.
Throughout the campaign, CCA utilised Fleisher¡¯s personal story of triumph and his musical talents to capture global media attention. In addition, CCA added dimension to Fleisher¡¯s story by unveiling patient case studies in key markets to highlight the personal impact of dystonia. A range of multimedia tools were used to aid in reaching key audiences ¨C opinion-leading physicians, patients and media. Tailored press materials, including photographs of Fleisher, were distributed at the most suitable European medical meeting and musical performance during 2004, which are outlined below.
CCA arranged for Fleisher to share his personal story and perform at the opening ceremony to an audience of health professionals, patient group representatives and media at the 8th International Congress of Parkinson¡¯s Disease and Movement Disorders, Movement Disorder Society (MDS) Annual Meeting, Rome June, 2004
CCA also liaised with the MDS to coordinate a media briefing to highlight scientific data on the treatment of dystonia sufferers. The panel included Fleisher, leading Italian neurologist Professor Berardelli, NIH physicians, and DMRF/EDF representatives. Following the briefing, exclusive interviews were arranged between journalists and Fleisher. To extend European outreach, CCA conducted local market outreach with translated press materials in six key markets (UK, France, Italy, Spain, Switzerland and Sweden).
As an extension of this campaign, Leon Fleisher offered a world-premiere performance with the Berlin Philharmonic of Paul Hindemith¡¯s left-handed piece, previously lost for more than 60 years. Based upon analysis of the European media garnered through MDS, CCA executed a concentrated media outreach effort in Germany utilising the concert, local spokesperson (Dr. Altenmeuller) and EDF to extend reach and attention on dystonia and Maestro Fleisher¡¯s personal triumph.
For the official release of Fleisher¡¯s CD ¨C his first two-handed solo recording in more than 40 years ¨C ¡°Two Hands¡±, CCA conducted targeted outreach including a concentrated effort on radio to build upon the existing media platform. Fleisher and core DMRF spokespeople were featured in media interviews to convey key messages about Fleisher¡¯s success in overcoming dystonia. Fleisher¡¯s story of personal triumph and his resulting commitment to education and research, as featured on the CD insert ¨C has resounded through numerous reviews and media stories worldwide, including notation that a portion of the proceeds from the record are being donated to the DMRF.
Freedom to Play campaign efforts have garnered more than 30 million media impressions spanning major European outlets including the UK (The Times, The Daily Telegraph), Italy (L¡¯Unita, Repubblica Salute), and Germany (S¨¹ddeutsche Zeitung and Die Welt).
An excerpt from this CD¡¯s review in the Daily Telegraph illustrates the powerful and personal impact of this campaign: ¡°For 35 years Leon Fleisher had to give up playing the piano with two hands because he suffered from the muscular ailment dystonia. Recent treatment has enabled him to revert to normal practice and this is his first two-hand recording for over 40 years.
¡°At 75, Fleisher celebrates with a deeply thoughtful and poetic interpretation of Schubert¡¯s Sonata in B flat (D.960), deserving to be ranked with the best of them for its variation of mood, control of dynamics and insight into the music. The other tracks are devoted to shorter pieces, played with a touching kind of affection, as though Fleisher was greeting old friends after a long absence. They are all performed with what one can only describe as loving grace.¡±