Gill is a Speech and Language Therapist with longstanding clinical and research experience, particularly in the field of Augmentative and Alternative Communication (AAC). She worked for Sheffield Speech and Language Therapy service from 1989 – 2008, when she moved to the Netherlands. After working as a researcher on a number of AAC-related and research projects (both English and Dutch) she began work as a researcher at the Rett Expertise Centre Netherlands-GKC in March 2013. Since the summer of 2018 she has also been working as lead of Rett UK’s Communication and Education Support Project. She currently works across both countries.

Gill was awarded her PhD by the University of Maastricht in July 2019, for a thesis entitled: Rett syndrome: Recognising the communication challenges, needs and potential of individuals living with a rare disease. Her thesis is available for download from: https://cris.maastrichtuniversity.nl/en/publications/rett-syndrome-recognising-the-communication-challenges-needs-and-

In addition, she has a Master of Philosophy degree (by own research) and a Bachelor of Medical Science (Speech) (Honours) degree, both awarded by the University of Sheffield, UK. She is a BROK^® certified clinical investigator and a registered member of the Royal College of Speech and Language Therapists and the UK Health Professions Council.

Gill is co-founder and coordinator of two national networks for Communication Professionals who work with individuals with Rett syndrome, one in the UK and one in the Netherlands, as well as Rett UK’s network of Regional Communication Champions. She also co-founded the Dutch Network for physiotherapists who work with individuals with Rett syndrome. Gill has close connections with all of the European Rett Associations; she is the UK and European representative on the North American Rett Clinics Network and, in June 2019, was asked to form and chair a Scientific Advisory Board for Rett Syndrome Europe (the umbrella organisation for European Rett associations). Since 2016, she has led the Rettsyndrome.org-funded international project to develop clinical guidelines for the assessment, intervention and long-term management of communication in individuals with Rett syndrome. The Guidelines handbook was published in spring 2020.

In addition to the guidelines project team, which includes colleagues from the US, Sweden and Australia, Gill has developed research collaborations with teams at University College London, iDN@Göttingen and Graz and the Karolinska Institutet, the Otorhinolaryngology Department at Maastricht University Medical Centre, and with her colleagues at the Rett Expertise Centre Netherlands-GKC and Rett UK. Her current research interests include:

• Development of consensus-based guidelines for the management of communication in individuals with Rett syndrome;
• Eye-tracking in individuals with Rett syndrome and the functional use of eye gaze for communication;
• Development of alternative methodologies for assessing language and cognition in individuals with Rett syndrome;
• Early (pre-diagnosis) communication development in individuals with typical and atypical Rett syndrome;
• European policy in relation to rare diseases and its implications for Rett syndrome; and,
• The establishment of clinical and research-based networks and collaborations both within and outside of Europe.

PUBLICATIONS (since 2013)

• Townend GS, Bartolotta TE, Urbanowicz A, Wandin H, Curfs LMG. (2020). Development of consensus-based guidelines for managing communication in individuals with Rett syndrome. Augmentative and Alternative Communication. E-pub ahead of print: doi: 1080/07434618.2020.1785009
• Townend GS, Bartolotta TE, Urbanowicz A, Wandin H, Curfs LMG. (2020). Rett syndrome communication guidelines: a handbook for therapists, educators and families. Rett Expertise Centre Netherlands-GKC, Maastricht, NL, and Rettsyndrome.org, Cincinatti, OH.
• Townend G.S. (2019). Rett syndrome: Recognizing the communication challenges, needs and potential of individuals living with a rare disease. ProefschriftMaken, Maastricht. doi: 10.26481/dis.20190704gt
• Smeets EE, Townend GS, Curfs LMG. (2019). Rett syndrome and developmental regression. Neuroscience and Biobehavioral Reviews. 104,100-1. doi: 10.1016/j.neubiorev.2019.06.038
• Zhang D, Bedogni F, Boterberg S, Camfield C, Camfield P, Charman T, Curfs L,…Townend GS…and Marschik PB. (2019). Towards a consensus on developmental regression. Neuroscience and Biobehavioral Reviews. 107, 3-5. doi: 10.1016/j.neubiorev.2019.08.014.
• De Breet L, Townend GS, Curfs LMG, Kingma H, Smeets E, Widdershoven J, van de Berg R. (2019). Challenges in evaluating the oculomotor function in individuals with Rett syndrome using electronystagmography. European Journal of Paediatric Neurology, 23(2), 262-269. doi: 10.1016/j.ejpn.2018.12.003
• Townend GS, van de Berg R, De Breet L, Hiemstra M, Wagter L, Smeets E, Widdershoven J, Kingma H, Curfs LMG. (2018). Oculomotor function in individuals with Rett syndrome. Pediatric Neurology, 88, 48-58. doi: 1016/j.pediatrneurol.2018.08.022
• Townend GS, Ehrhart F, van Kranen HJ, Wilkinson M, Jacobsen A, Roos M, Willighagen EL, van Enckevort D, Evelo CT, Curfs LMG. (2018). MECP2 variation in Rett syndrome – an overview of current coverage of genetic and phenotype data within existing databases. Human Mutation. 39(9), 914–924. doi: 1002/humu.23542
• Borst HE, Townend GS, van Eck M, Smeets E, van den Berg, M, Laan A, Curfs LMG. (2018). Abnormal foot position and standing and walking ability in Rett syndrome: an exploratory study. Journal of Developmental and Physical Disabilities. 30(2), 281-195. doi: 1007/s10882-017-9585-6
• Marschik PB, Lemcke S, Einspieler C, Zhang D, Bölte S, Townend GS, Lauritsen M. (2018). Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach. Developmental Neurorehabilitation. 21(1), 68-72. doi: 1080/17518423.2017.1323970
• Townend GS, Marschik PB, Kaufmann W, Fabio RA, Sigafoos J, Curfs LMG. (2017). Cognition, Behaviour and Communication. In Kaufmann WE. (ed.) Rett Syndrome. Chapter 6, 50-61. London: MacKeith Press.
• Williams K, Keeley T, Malmenäs M, Phelps H, Jordan P, Anand R, Kaminsky S, Bartolotta T, Curfs L, Kaufmann W, Mariotti O, Neul J, Nues P, Percy AK, Sharma G, Townend G.(2017). Burden of disease in Rett syndrome: a qualitative analysis and development of a conceptual model. Value in Health, 20(5), A226-A226.
• Townend GS, Smeets E, Marschik PB, Curfs LMG. (2016). Communication in Individuals with Rett Syndrome: What we know now and what we have yet to find out. Wiener Medizinische Wochenschrift. 166(11): 371-374.
• Townend GS, Marschik PB, Smeets E, van de Berg R, van den Berg M, Curfs LMG. (2016). Eye Gaze Technology as a Form of Augmentative and Alternative Communication for Individuals with Rett Syndrome: Experiences of Families in The Netherlands. Journal of Developmental and Physical Disabilities. 28: 101-12. doi: 1007/s10882-015-9455-z
• Townend GS, Bartl-Pokorny KD, Sigafoos J, Curfs LMG, Bolte S, Poustka L, Einspieler C, Marschik PB. (2015). Comparing social reciprocity in preserved speech variant and typical Rett syndrome during the early years of life. Research in Developmental Disabilities. 43-44: 80-6. doi: 1016/j.ridd.2015.06.008
• Townend GS, Smeets E, van Waardenburg D, van der Stel R, van den Berg M, van Kranen HJ, Curfs LMG. (2015). Rett syndrome and the role of national parent associations within a European context. Rare Diseases and Orphan Drugs. 2(2): 17-26.
• Townend GS, van Kranen HJ, van der Stel R, van den Berg M, Smeets E, van Waardenburg D, Curfs LMG. (2015). Rett Syndrome as a Rare Disease: A European Perspective. Public Health Genomics. 18(4): 233-6. doi: 1159/000381139
• Townend G. Roentgen U, Dalemans R. Witte de L. (2014). Wegwijzer Ondersteunde Communicatie. Final project report. Heerlen: HSZuyd/EIZT.
• Judge S, Townend G. (2013). Perceptions of the design of voice output communication aids. International Journal of Language & Communication Disorders, 48(4): 366-381. doi: 1111/1460-6984.12012

Publications in progress:

• Townend GS, Bartolotta TE, Urbanowicz A, Wandin H, Curfs LMG. Communication assessment and intervention in individuals with Rett Syndrome: a systematic literature review. To be submitted.
• Ward C, Chiat S, Townend GS. A Comparison of Formal and Informal Methods for Assessing Language and Cognition in Children with Rett Syndrome. To be submitted.

INTERNATIONAL CONFERENCE PRESENTATIONS (since 2013)

·       Prospective invitation: September/October 2020 (moved to 2021 due to COVID-19), 9^th World Congress on Rett Syndrome, Gold Coast, Australia

–        Invited speaker: title tbc

–        Organiser of “Country Updates” session for Worldwide Rett Associations

·       June 2020, AKUK Conference, Hamburg, Germany (moved online due to COVID-19)

–        Invited speaker: “Rett Syndrome Communication Guidelines”

·       March 2020, Rett Syndrome Study Day, Odense, Denmark

–        Invited speaker: “Assessment of receptive language and cognition in individuals with Rett syndrome”

–        Invited speaker: “Rett syndrome communication guidelines – a handbook for therapists, educators and families”

·       September 2019, 6^th European Rett Syndrome conference, Tampere, Finland

–        Invited speaker: “Assessing underlying skills of individuals with Rett syndrome”

–        Organiser of “Country Updates” session for European Rett Associations (26 countries with 29 posters)

·       September 2019, Communication Matters Conference, Leeds, UK

–        Oral presentation: “International guidelines for management of communication in individuals with Rett syndrome”

·       April 2019, Faculty and students of Speech-Language Pathology Department, Monmouth University, NJ, USA

–        Invited speaker: “Speech-language pathology & AAC services and support for people with physical and/or intellectual disabilities – a European perspective”

·       March 2019, Conference organised by Caritas Education Center for Social Services – ‘Augmentative and Alternative Communication’, St. Petersburg, USSR

–      Invited speaker: “International Guidelines for the Management of Communication in Individuals with Rett Syndrome” (video presentation)

• September 2018, RettRome2018, ‘Rett syndrome research, towards the future’, scientific meeting and parent conference, Rome, Italy
  • Oral and Poster presentations: “International Communication Guidelines for Individuals with Rett Syndrome”
  • Oral presentation: “Oculomotor function in individuals with Rett syndrome”
• May 2018, European Conference on Rare Diseases and Orphan Drugs, Vienna, Austria
  • Poster presentation: “International Guidelines for Management of Communication in Rett Syndrome”
• April 2018, 8ª Jornada Síndrome de RETT – ‘ABRIENDO PUERTAS’, Catalan Rett Association Conference – ‘Opening Doors’, Barcelona, Spain
  • Invited speaker: “International Guidelines for the Management of Communication in Individuals with Rett Syndrome”
• March 2018, North American Clinics Network meeting, teleconference by video link
  • Invited speaker: “Rett syndrome in a European context” AND “Development of international guidelines for management of communication – project update”
• November 2017, 5^th European Rett Syndrome conference, Berlin, Germany
  • Invited speaker: “Communication in individuals with Rett syndrome: challenges and possibilities”
  • Invited speaker: World Café “International guidelines for communication”
  • Invited speaker: Round Table “Future research directions – communication”
  • Organiser of “Country Updates” session for European Rett Associations (participation of 25 countries)
• September 2017, Society for the Study of Behavioural Phenotypes (SSBP), Leiden, Netherlands
  • Poster presentation: “Developing International Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome”
  • Poster presentation: “Communication Assessment and Intervention for Individuals with Rett Syndrome: how our understanding of the communication challenges and possibilities has changed over the last 30 years”
• September 2016, Rett 50.1 Vienna, Austria (celebrating the 50^th anniversary of the first publication on Rett syndrome)
  • Invited Speaker: “Communication in Individuals with Rett Syndrome: What we know now and what we have yet to find out”
  • Poster presentation: “European policy on rare diseases, the role of national Rett syndrome parent associations and Expertise centres”
  • Poster presentation: “Development of International Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome”
• September 2016, SSBP, Siena, Italy
  • Poster presentations: “Development of International Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome”
  • Poster presentation: “EU rare disease policy and Rett syndrome”
• June 2016, Rettsyndrome.org Family Conference, Chicago, USA
  • Invited speaker: “Development of clinical guidelines for the management of communication in individuals with Rett syndrome”
• June 2016, Rettsynsdrome.org Research Symposium, Chicago, USA
  • Invited speaker: “Behavioural phenotypes of Rett syndrome and developmental trajectories of socio-communicative forms and functions” (joint presentation with Dr. Peter Marschik, MU Graz)
  • Poster presentation: “Development of Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome”
• June 2016, World Rett Congress, Kazan, Russia
  • Poster presentation: “Development of Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome”
• October 2015, 4^th European Rett syndrome congress, Rome, Italy
  • Invited speaker: “Recognizing atypical developmental pathways: implications for speech, language and communication intervention” (joint presentation with Peter Marschik, MU Graz)
• Speaker: “Eye gaze technology as a form of augmentative and alternative communication support for individuals with Rett syndrome: experiences of families in the Netherlands”
• Poster presentation: “Comparing Social Reciprocity in Preserved Speech Variant and Typical Rett Syndrome during the Early Years of Life”
• Poster presentation: “Development of Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome”
• October 2013, 3^rd European Rett Syndrome Conference, Maastricht, Netherlands
  • Responsibility for organising the “Communication track” – a one-day programme of presentations focusing on communication in Rett syndrome (development, assessment, intervention and management strategies)
  • Organiser of “Country Updates” session for European Rett Associations (participation of 20 countries)

INTERNATIONAL WEBINAR PRESENTATIONS (since 2013)

·       May 2020, Facebook Live webcast, Rettsyndrome.org

–      “Intervention strategies for developing communication skills, part III” (with Prof. Theresa Bartolotta, Monmouth University, USA)

·       May 2020, Facebook Live Webcast, Rettsyndrome.org

–        “Intervention strategies for developing communication skills, part II” (with Prof. Theresa Bartolotta, Monmouth University, USA)

·       April 2020, Facebook Live Webcast, Rettsyndrome.org

–        “Intervention strategies for developing communication skills, part I” (with Prof. Theresa Bartolotta, Monmouth University, USA)

·       March 2020, Facebook Live Webcast, Rettsyndrome.org

–        “Communication engagement strategies” (with Prof. Theresa Bartolotta, Monmouth University, USA)

·       October 2019, Rett Ed Webinar, Rettsyndrome.org

–        “Newly-published Communication Guidelines for Rett” (with Prof. Theresa Bartolotta, Monmouth University, USA)

WORKSHOP/SEMINAR PRESENTATIONS: UK & NETHERLANDS

Rett UK (since 2018)

• January 2020, Regional workshops, each presented in two locations:
  • “Using Low Tech Strategies & Resources” (organiser and presenter with Callie Ward, Rett UK)
  • “Adapting & Personalizing High Tech Resources” (organiser and presenter with Callie Ward, Rett UK)
  • “Introduction to Literacy” (organiser and presenter with Callie Ward, Rett UK)
• November 2019, Annual Study Day, presented in two locations, UK SLT Network (organiser and presenter with Callie Ward)
• June 2019, Two-day Training Weekend, Rett UK Regional Communication Champions (organiser and presenter with Callie Ward)
• June 2019, Two-day Regional Weekend, Study day for professionals plus separate event for families (presenter on both days)
• November 2018, ‘Kick-off’ Study Day, presented in two locations, New UK Network for Speech and Language Therapists working with individuals with Rett syndrome (organiser and presenter with Callie Ward

Dutch Rett Syndrome Association (NRSV) & other Dutch organisations (since 2013)

• May 2020, Online meeting, Dutch SLT Network (organiser)
• January 2020, Study day, Multi-disciplinary Teams working with individuals with Rett syndrome in the Netherlands – “Introduction to AAC” (organiser and presenter with Hanneke Borst)
• October 2019, Study day, Dutch SLT Network (organiser and presenter)
• June 2019, Study day, Multi-disciplinary Teams working with individuals with Rett syndrome in the Netherlands – “Introduction to AAC” (organiser and presenter with Hanneke Borst and Gerna Scholte)
• March 2019, Study day, Dutch SLT Network (organiser and presenter)
• October 2018, Kick-off, New Dutch Network for Physiotherapists working with individuals with Rett syndrome (organiser and presenter with Hanneke Borst)
• October 2018, Study day, Dutch SLT Network (organiser and presenter)
• October 2018, Seminar presentation, NRSV conference for parents and professionals “Rett Beweegt” – “Communication research update”
• September 2018, Seminar presentation, NRSV workshop for parents – “Overview of hardware, software and language programmes for communication”
• March 2018, Study day, Dutch SLT Network (organiser and presenter with Gerna Scholte)
• November 2017, Communication workshop for Dutch parents – “AAC and early literacy strategies” (organiser and presenter with Gerna Scholte; repeated on 2 dates)
• October 2017, Study day, Dutch SLT Network (organiser and presenter with Gerna Scholte)
• March 2017, Study day, Inaugural meeting of Dutch Network for Speech and Language Therapists working with individuals with Rett syndrome (organiser and presenter with Gerna Scholte)
• March 2017, Communication workshop for Dutch parents – “AAC and early literacy strategies” (organiser and presenter with Gerna Scholte)
• November 2016, Seminar presentation, Rett Education NL – “Update on communication research in the Netherlands”
• November 2016, Workshop presentation, ‘s Heeren Loo (Dutch care provider for individuals with severe disabilities) – “Rett Syndrome” (with Dr. Eric Smeets)
• September 2014, Seminar presentation, NRSV workshop for parents – “Precursors to communication”

WEBINAR PRESENTATIONS: UK & NETHERLANDS

Rett UK

·       July 2020, Rett UK: “New Rett Syndrome Communication Guidelines”

·       May 2020, Rett UK: “How to Master the Yes/No Game” (with Abigail Davison-Hoult, Rett UK)

·       April 2020, Rett UK: “Homeschooling and COVID-19” (with Abigail Davison-Hoult, Rett UK)

·       October 2019, UK SLT Network: “Assessment of Language and Cognition in Individuals with Rett Syndrome, Part 3” (with Callie Ward, Rett UK)

• June 2019, UK SLT Network: “Assessment of Language and Cognition in Individuals with Rett Syndrome, Part 2” (with Callie Ward, Rett UK)
• May 2019, UK SLT Network: “Assessment of Language and Cognition in Individuals with Rett Syndrome, Part 1” (with Callie Ward, Rett UK)
• March 2019, UK SLT Network: “A Parent’s Perspective on Communication: Implementing AAC in Rett syndrome” (with Abigail Davison-Hoult, Rett UK)
• November 2018, New UK Network for Speech and Language Therapists working with individuals with Rett syndrome “Introduction to Rett Syndrome” (with Callie Ward, Rett UK)

NRSV

• December 2018, New Dutch Network for Physiotherapists working with individuals with Rett syndrome – “Introduction to Rett Syndrome” (with Hanneke Borst)
• September 2017, NRSV: “Introduction to AAC strategies” (with Gerna Scholte)
• June 2017, New Dutch Network for Speech and Language Therapists working with individuals with Rett syndrome: “Introduction to AAC strategies” (with Gerna Scholte)

For the following webinars I was organiser and facilitator but not main presenter:

• April 2020, Joint UK & Dutch SLT Networks: “Reading Avenue”(presented by Tina Voizey, Tobii Dynavox, USA)
• April 2020, Dutch SLT Network: “Lees Ontwikkeling en Spelling (LOeS) werkwijze”(presented by Loes Theunissen, Sint Maartenskliniek, NL)
• April2020, Joint UK & Dutch SLT Networks: “Comprehensive Literacy Instruction for Beginning Conventional Learners” (presented by Maureen Donnelly, Tobii Dynavox, USA)
• March 2020, Joint UK & Dutch SLT Networks: “Comprehensive Literacy Instruction for Emergent Learners”(presented by Maureen Donnelly, Tobii Dynavox, USA)
• February 2020, Joint UK & Dutch SLT Networks: “Why is Literacy Critical in AAC?” (with recording of the keynote address by Dr. Karen Erickson, Center for Literacy and Disability Studies, Chapel Hill, USA)
• November 2019, Dutch SLT Network: “Ouder worden met Rett” (presented by Dr Eric Smeets)
• September 2019, Joint UK & Dutch SLT Networks: “Addressing Complex Communication Needs of Individuals with Rett Syndrome via Telehealth” (presented by Dr Jennifer McComas from University of Minnesota, USA)
• January – March 2019, Dutch SLT Network: series of 7 webinars on eye gaze (presented by Gerna Scholte and others)
• November 2018, Dutch SLT Network: “Parents Perspective on Communication, Implementing AAC” (presented by Abigail Davison-Hoult, Rett UK)
• September 2018, Dutch SLT Network SLTs: “Communication on the Move, Out and About” (presented by Callie Ward, Rett UK)
• June 2018, Dutch SLT Network SLTs: “Connoisseur instead of client: a fresh look at people with disabilities and Rett syndrome” (presented by Ans Cornel, freelance AAC expert, NL)
• February 2018, Dutch SLT Network: “Reading and spelling for children with minimal/no speech” (presented by Loes Theunissen, Sint Maartenskliek, NL)
• January 2018, Dutch SLT Network: “Rett syndrome and literacy” (presented by Dr. Stephanie Sachse, University of Cologne))
• September 2017, Dutch SLT Network: “Literacy” (presented by Renske Mutsaers, freelance AAC expert, NL)