Regional reps
Each of our reps is close to someone with PMS. They welcome new families and are there to talk to, wherever you live in the UK and Ireland.
Not sure which region you are in? See the family map, or email info@pmsf.org.uk and we will put you in touch.
Your rep will get in touch once your PMSF membership form has been received. Join PMSF & PMSF UK.
Lynda White
Lead: Lead Regional Rep
Lynda lives in the Black Country, not far from her daughter Tanith and her grandson Harrison, who has PMS and lives in Birmingham.
Lynda and Harrison can often be found on road bridges over the motorway, watching the traffic speed by. It is one of Harrison's favourite things to do.
Email Lynda: lyndawhite@pmsf.org.uk
Sylvia Millership
Supports all regions: Multi-Regional Rep
Sylvia lives in Stourbridge, West Midlands, with her husband Trevor; they have been married for 49 years. They have three children: two sons and a daughter, Gemma, who is mum to Noah and Jacob.
Noah was diagnosed with PMS in 2016. He is a very happy child and mostly healthy at present. He has cognitive delay and is mostly non-verbal, but very vocal.
As our multi-regional rep, Sylvia supports our team of reps wherever she is needed.
Email Sylvia: sylviamillership@pmsf.org.uk
Rosie Bovaird
Northern Ireland & Republic of Ireland: Regional Rep
Rosie lives in Portstewart, a small coastal town in Northern Ireland, with her husband Nigel and their children Lucas (born 2006), Keyva (born 2009) and Caden (born 2013).
Lucas has PMS and was diagnosed in 2009. He has a very small deletion, and also has learning disabilities, autism, OCD and ADHD. He is a happy, gentle boy who is non-verbal but makes lots of happy noises.
Lucas uses an iPad to communicate and has over 400 words. He knows his animals, transport, colours and shapes, and can ask for help with his personal needs. He is very mobile, very fast, and loves anything physical, including swimming.
Email Rosie: rosiebovaird@pmsf.org.uk
Victoria Feddersen-Scott
East Midlands: Regional Rep
Victoria lives near Retford with her two daughters. Her youngest, Emily, who is 8, has Phelan-McDermid Syndrome. Emily has mosaicism and a large deletion.
The syndrome affects Emily's everyday life, but she has overcome so many obstacles and achieved so much. Victoria is very proud of her: she is a joy to be around, and every moment with her is to be treasured.
Email Victoria: victoriafeddersen@pmsf.org.uk
Katie Greed
London: Regional Rep and Science Lead
Katie lives in Berkshire with her husband Tom and their daughters, Bella and Sophia. Bella, born in 2011, has Phelan-McDermid Syndrome and was diagnosed at 5. She has a small deletion, and is now extremely sociable and chatty.
Katie studied Neuroscience at King's College and follows the latest research into PMS and child development.
Email Katie: katiegreed@pmsf.org.uk
Peter Greene
South & South West: Regional Rep
Peter lives in Surrey with his wife Amy and their three children. Their youngest, Gracie, who is 7, has PMS and was diagnosed when she was nearly 3.
Gracie is non-verbal but communicates in her own way. She is loving, sociable and loves having fun with her family.
Email Peter: petergreene@pmsf.org.uk
Ann Hill
Scotland: Regional Rep
Ann lives in Kelso in the Scottish Borders and is mum to Mark, who is 26, and Darren, who is 21.
Darren has Phelan-McDermid Syndrome and was diagnosed in July 2007.
Email Ann: annhill@pmsf.org.uk
Becky James
East: Regional Rep
Becky lives in Suffolk with her two children, Ezra, who is 8, and Sofia, who is nearly 2.
At 4 weeks old Sofia was found to have complex congenital heart disease needing open heart surgery, and at 3 months she was diagnosed with PMS and another rare chromosomal condition. Since then she has faced a series of medical issues, including severe feeding and gastrointestinal difficulties, sight problems and brain differences that will affect her mobility, speech and cognition throughout her life.
Sofia is a little warrior, with great tenacity and courage.
Email Becky: beckyjames@pmsf.org.uk
Clare Lowry
South West: Regional Rep and Psychology Lead
Clare lives in Falmouth, Cornwall, with her husband. Her granddaughter Eva, who is 7, has Phelan-McDermid Syndrome and lives in Malmö, Sweden, with her dad Will and mum Emili.
Clare has learnt a lot about PMS from Eva, Will and Emili, and about the challenges of parenting a child with complex needs.
Clare is an educational psychologist and accredited holistic sleep coach, and hopes to use this knowledge to support families and the wider PMS community.
Email Clare: clarelowry@pmsf.org.uk
Joe Novak
North: Regional Rep
Joe lives in Nuneaton, Warwickshire, with his wife Elissa, their son Ivan and Bertie the chihuahua.
Ivan was diagnosed with Phelan-McDermid Syndrome in December 2021, just after his second birthday. He has hypotonia, dysphagia, hydrocephalus, hip dysplasia and severe gastrointestinal problems. He has had several regressions that have affected his development: he lost his babble and words and is now non-verbal. He can walk short distances with support.
Ivan loves being outside, playing with his cousins and his pony lessons, which help his core strength, and swings. He has a cheeky personality and a smile to match.
Email Joe: joenovak@pmsf.org.uk
Tanith Sherwood
West Midlands & Wales: Regional Rep
Tanith lives in Birmingham with her husband Darren and their son Harrison. Harrison was diagnosed just before his first birthday in 2013, one of the youngest children to be diagnosed with Phelan-McDermid Syndrome.
Harrison is mobile, though still a little unsteady, has hypertonia and is doubly incontinent. He is non-verbal, but that doesn't stop him communicating: he points, taps and takes you to what he wants. He has a wicked sense of humour, is always happy, and has a smile that lights up a room.
Email Tanith: tanithsherwood@pmsf.org.uk