ABOUT DEBRA NZ
DEBRA New Zealand is a registered charity providing access to medical advice and support for people and families affected by all types of EB.
Established in 1980, DEBRA New Zealand’s founding focus is as relevant today as it was then:
to support DEBRA families;
to ensure those with EB know they are not alone;
to ensure practical advice and guidance is shared;
to ensure clinicians and families have information on and access to current best practice care and treatment.
employs four EB specialist nurses (part-time), who work around New Zealand and assist with meeting the goals of improving care and treatment for people with EB.
provides those with EB and their families with emotional support, educational information, and assists them in obtaining appropriate medical, social and genetic counselling.
provides information to doctors and other health professionals as in most cases the first time they come across EB is when a child in their region is born with EB.
is a hub for spreading clinical expertise, the latest international research, and knowledge from others’ personal experiences.
aims to raise awareness and educate the public and medical professionals about EB.
DEBRA NZ became a charitable trust in 1985 and registered with the Charities Commission in 2008.
DEBRA NZ has three trustees: Neville Carson (chair), Jillyan Hing, and Professor Ingrid Winship.
DEBRA NZ is a member of DEBRA International. DEBRA NZ Ambassador Humphrey Hanley is on the DEBRA International Executive Committee and is the current vice president.
Our director, Anna Kemble Welch, is a past president of DEBRA International and an ambassador for EB Without Borders. Lea Prujean works part-time for DEBRA NZ.
MEET THE TEAM
THE EB NURSES
EB Clinical Nurse Specialist
Originally from the UK, Jacqui Finnigan trained as a nurse in London. Her career with caring for children started two years later in 1986 when she qualified as a Registered Sick Children’s Nurse and worked with children and families in the inpatient hospital setting. She then went on to manage a busy Children’s Outpatient Department.
Over the years Jacqui undertook further training courses in various specialty areas of children’s nursing and successfully studied for a BSc (Hons) in Health Service Management and obtained a 2:1.
In 1993 Jacqui became a Children’s Community Nurse in Central London and it was in this role that she was introduced to EB. Jacqui supported children with EB and their families and worked in partnership with the EB Team at Great Ormond Street Children’s Hospital.
Jacqui consolidated her community nursing experience by obtaining a BSc (Hons) Community Health Care (Children’s Nursing) / Specialist Practitioner Community Children’s Nursing with a 1st in 1997.
In 2000 Jacqui moved to NZ and the following year took up a position of Children’s Community Nurse at Starship Children’s Hospital.
In 2005 Jacqui met the Director of DEBRA NZ and since then she has contributed to DEBRA’s nursing team as a part time EB Nurse Specialist.
"I am passionate about supporting clients with EB and their families to help them achieve their maximum health potential and best quality of life,” she says.
In 2008 Jacqui changed her position at the Auckland DHB. Jacqui is currently employed there part-time as a Nurse Specialist and Coordinator of a respite care programme. In this role Jacqui supports families with medically fragile children across four DHBs in the North Island, as well as her role as an EB Nurse Specialist.
EB Clinical Nurse Specialist
Sharon is a Registered Nurse with over 28 years experience in surgical nursing. She holds a Post Graduate Diploma in Professional Nursing Practice and at the end of 2008 was awarded the NZ Nurses Association Flora Cameron Award for excellence in practice
Sharon works part time for the Paediatric Department at Christchurch Hospital. Her background is in burns, plastic surgery and wound care nursing and she is the wound resource nurse for the department. 8 hours a week is spent as a senior staff nurse on a busy surgical ward and the other 12 hours as a Clinical Nurse Specialist (outreach nurse) co-ordinating the care for EB children in the Christchurch area.
Sharon also runs her own community nursing business called SOS Nursing and one of her contracts is part time to DEBRA NZ. She is a member of the New Zealand Nurses Association, New Zealand Childrens & Young Person’s of Aotearoa, New Zealand Wound Care Society and Australia New Zealand Burns Association.
EB Clinical Nurse
Deanna Forsyth was born and raised in the Bay of Plenty and completed her training at WINTEC (Waikato Institute of Technology) in 2002. Since then, she has completed a range of roles including general ward and ED nursing at Taupo and Taumaranui Hospitals.
Deanna has worked and volunteered for an organisation that ran outdoor adventure camps for people with disabilities. This is where she met the DEBRA NZ family on one of their adventure camps for teens and young adults. Soon after that when the first DEBRA NZ EB Nurse Mindy Fowler was moving back to the USA, she took on the EB Nurse role part time from 2004 - 2009. During this time she also completed a post graduate paper in wound care and has had some training and work experience with Hospice in Taupo. Since then Deanna has married Rhys Forsyth and they have 3 children.
Deanna loves travel and has traveled to the States with her family for her husband’s work in the ski industry. Together they ran trips over the NZ summer school holiday's for young kiwi freestyle skiers. They took a team of teenagers for around 5 weeks and Rhys would coach them on snow and Deanna would be camp nurse / mum. After the teens went home and back to school, Deanna and family would stay on for another month or two and host individuals or groups for their ski adventures and have some family ski time themselves.
They are now based in Taupo, where Rhys is a builder and Deanna home school’s their children. Deanna re-joined the DEBRA nursing team in 2018 and works 1-2 days a week, keeping in touch with the DEBRA folk and families in the Central North Island including Waikato, Bay of Plenty and Gisborne districts.
EB Clinical Nurse
Mo Blishen is a Wellington based nurse who graduated in 2001. Her main areas of working have been surgical and recovery before working as a district nurse for 6 years.
Trained in Wellington, she has worked around Australia and the UAE as an agency nurse. Now settled back in Wellington, she completed her post grad certificate in Hospice Palliative Care.
In Mo’s words: “Working with DEBRA is an exciting challenge. I am pretty resourceful and have a tendency to think outside the box, so I enjoy being able to problem solve and support DEBRA's clients.”
Her DEBRA clients are mostly in Wellington and the lower North Island and also Auckland where she helps Jacqui with some of her large work load.