The Committee are responsible for the strategic management of the organisation and delivery of our charitable objectives. Our trustees are not paid and they all hold voluntary posts. Our board is made up of very experienced and talented people, many of whom have a direct personal understanding of Primary Ciliary Dyskinesia.

  • Lucy Dixon | Chair

    Lucy has been involved with the PCD Family Support Group since 2014, firstly as an adult representative, before taking on the role of Chair in June 2020. Diagnosed with PCD (Kartagener’s) when she was 4 years old, Lucy has raised awareness of the condition from a young age, as a demonstration patient in medical exams for student doctors. Nowadays, she talks to students, clinicians and other organisations about PCD and supports patients and families affected by PCD, alongside the rest of the committee.

    Outside of volunteering with the PCD Family Support Group, Lucy’s professional background focusses on addressing inequality in both education and health. She is a Snowdon Master’s Scholar (2020-2021) and a Black Heart Foundation Scholar (2020-2021) and will be studying for a masters in Social Research at the University of York from September 2020. In her spare time she enjoys exploring her local area of West Wales, as well as learning new languages, travelling, and live music.

    Instagram: @el_dicko1 LinkedIn: Lucy Dixon

  • Abdullah Ihsan | Treasurer

    Abdullah has been involved with the PCD family support group since July 2019. He was diagnosed with PCD (Kartageners syndrome) at the age of 9, however there was no treatment plan in place until he was 16 years old. Since joining the committee he has attended various events to promote PCD and intends to support future fundraising events.

    Abdullah is currently a Data Analyst at a transport and logistics company called Maersk, where he started as an Apprentice. His hobbies include going to the gym, watching movies, and eating out as he loves trying new foods.

  • Katie Dexter | Communications

    Katie Dexter handles Communications for the PCD Family Support Group by keeping the website up-to-date and using outlets such as social media. Katie has PCD herself and was diagnosed in her late teens. She joined the committee in July 2019, but has been an advocate and fundraiser for many years prior.

    With a PhD in Physics, Katie works in preclinical imaging at Barts Cancer Institute. Her hobbies include boxing, obstacle course racing, skiing, drawing, and all things science.

    Twitter: @PCD_UK and @dexter_kt   Instagram: @pcdsupportuk and @dexter_kt LinkedIn: dexter-katie

     

  • Charlotte Kewell | Commuications

    As parent to an 11 year old daughter with PCD, Charlotte has been an active commitee member of PCD Family Support Group for over 7 years. She is passionate about supporting families and carers connected to this rare disease.  As a marketeer in the arts and heritage sector, she assists with the group’s marketing communications, represents the group at events and helps organise events that engage and connect with the clinical community.

  • Gary Tipping | Events and Merchandise

    Gary has been a committee member since 2006.  Husband of Myra, he has always been a general  committee member, assisting wherever he can, and attending events representing the family support group. Gary is the contact for fund raisers requiring PCD branded equipment.

    Gary’s hobbies include building sports cars, motorsport and being an active member of several car clubs.
    He has a great interest in music and along with his sons, he runs a small record label specialising in Americana music.

  • Myra Tipping | Adult Rep

    Myra is the Adult Contact on the committee.  She was Secretary for the group from 2006 to 2020, and has represented the PCD support group at many events. She has PCD herself, and was diagnosed when she was 42 years of age.
    Myra used to work as a teacher and is a keen bridge player. She is a member of two book clubs and her hobbies also include, yoga, music, theatre and film.
  • Poonam Sodha | Adult Rep

    Poonam is one of the contacts for adults with PCD. She was diagnosed herself at the age of nine after being told her symptoms were asthma related. Poonam’s professional background is in data visualisation and analytics; she currently works as a Business Data Analyst for Save the Children and uses her position to encourage discussions on racial inequity in the international non-profit sector.

    In her free time, she enjoys learning new languages, having recently become Level 1 and 2 qualified in British Sign Language. Poonam also enjoys travelling and playing the saxophone.

  • Nhu Tran | Children Rep

    Nhu became a Committee member in 2013 and is the Children Representative for the charity. She is also a Parents-Patients-Public Reference Group member for the merger of Royal Brompton and King’s Health Partners Partnership.
    Nhu is mother to a young daughter who has PCD who was diagnosed with PCD at the age of two.  Nhu had no idea what PCD was and had so many unanswered questions that she reached out to the PCD Family Support Group for support and guidance. Nhu has raised awareness through many avenues including, charity runs and also giving an interview with the BBC.
    Outside her charity work, Nhu works for an investment bank and is a negotiator procuring technology globally for her company.  She tries to keep fit going to the gym, running and trekking whenever possible. Nhu also enjoy travelling  and loves to cook for her family and friends.

Volunteers

  • Susanne Shanks | Scotland Rep
  • Edel Cloughe | Scotland Rep
  • Sylvie Prouse | Volunteer
  • Terry Irwin | Volunteer
  • Fiona Copeland | Volunteer

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.