Bowel Group for Kids : Hirschsprung's disease : Imperforate anus :

Bowel Group for Kids Inc
Duncan Armstrong - Patron of the Bowel Group for Kids Inc
Bowel Group for Kids Inc
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Bowel Group for Kids Inc
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Bowel Group for Kids Inc
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ARM - Imperforate Anus
Down Syndrome and Hirschsprung's Disease
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About The Bowel Group for Kids

The BGK was formed in 1996 by a group of parents and professionals who saw the need for a support group for children and families affected by Hirschsprung’s Disease (HSCR) and Ano-Rectal Malformations/imperforate anus (ARM). But how did we actually come about?

Prior to the BGK forming, a small support group for HSCR was already running at the Children’s Hospital Westmead (CHW) in Sydney by Eunice and Geoff . Around the same time that Eunice was trying to expand this group, Vicki and Paul and Dr. E. Shi at Sydney Children’s Hospital (SCH) were talking about starting a group for ARM. Jenny was working at SCH at the time as an RN and along with Doreen Gribbin (mother and nurse), we all began discussions on how to bring the 2 together. It was quickly decided that we could form a support group that encompassed both HSCR and ARM and other bowel conditions together. Even though these conditions are very different in origin and presentation, they are congenital, rare and result in very similar long term complications and problems. We initially formed under the banner name of A.P.S.A. but later changed our name to Bowel Group for Kids (BGK) to be more user friendly!

So Jenny, Doreen, Eunice, Geoff and Dr. David Croaker met on a regular basis to ‘form’ the support group along with many people behind the scenes. We started off with a very old computer and just a few dollars that each of us put toward expenses. We started the fundraising effort immediately! We had and continue to have the backing of both Children’s Hospitals in Sydney. A lot of the legal leg work was done by Doreen in the early days to set us up as a charity. We spent considerable time meeting to construct our constitution and meet the guidelines set down by the various governing bodies. The duties and responsibilities of the management of charities are wide ranging and have to be taken seriously. Being an incorporated registered charity come with certain responsibilities and adherence to protocols from Government such as:

The NSW Office of Liquor, Gaming and Racing authorizes the BGK to fundraise under their Office Of Charities department. To qualify for this we must submit audited reports to them for verification and abide by the laws set down. Our charity registration number is: CFN 12693 The BGK is incorporated under the laws set down by the Department of Fair Trading. Incorporation benefits an association and its members, however it also brings a number of statutory obligations. The Associations Incorporations Act 1984 provides community groups with a simple and inexpensive means of becoming a legal entity. The BGK is a deductable gift recipient (DGR) under the laws of the Australian Taxation office which means any donations over $2.00 are tax deductable.

Each year we must send off an audited financial report to these Government authorities and inevitably then spend the next few months responding to the never ending requests for further information or adherence to changes to the way the forms are filled out from year to year! Our financial reports are maintained on the MYOB system which has streamlined things considerably over the years. We have come along way from our beginnings of keeping a paper trail of expenses etc. Eunice has very vivid memories of typing our very first conference notice on a portable typewriter!

No-one on the committee is in a paid position; we are all in voluntary positions. We receive absolutely NO money from Government so we rely wholly on monies that we receive through donations, fundraising and member fees. This money is put towards the ongoing costs of maintaining the group. We try to keep our membership fee low and we haven’t increased it for many years. Fundraising for bowel disorders is never easy though so we are very thankful for any donation we receive. The BGK membership includes families from all states and territories in Australia and members in New Zealand, China and the USA. Our membership continues to grow but it has been a hard road to this point to get ourselves ‘out there’. We often get asked why we don’t ‘advertise’ ourselves to Doctors, other medical professionals and hospitals, the answer is WE DO !! A lot of the time what happens is we have a contact within a hospital but then that person moves on to another job or area etc. and we have to start all over again. The best advertising we can have is word of mouth by you, our existing members. Please tell your surgeons, paediatricians, gastroenterologists, Stomal therapists, continence nurses, dieticians and anyone else you can think of about us. Now with the internet and our web page, finding us is becoming a little easier. Our committee has seen many changes over the years and we thank all those people who have been along with us at one time or another. Initially our committee was situated in Sydney and we were able to hold meetings regularly. We are now spread out across the globe. We utilise the internet greatly and also have ‘conference calls’. We also hold our AGM at our yearly conferences where most committee members are present. Which brings me to our present committee. We are comprised of parents and professionals from many walks of life dedicated to helping families affected by HSCR or ARM.

PATRON - Duncan Armstrong

Olympian, sports presenter, public speaker - Duncan is all these things and more. Duncan approaches everything with the same zestful attitude - the very one that helped him win gold at the Seoul Olympics... and more recently inspires parents and their children to achieve their highest personal and health goals at our annual conferences. Duncan is highly qualified to advocate for us, he too was born with Hirschsprung’s disease so can speak from a personal and more recently a parental perspective following the birth of his fourth child who was also born with HSCR.

President - Jenny

I was a paediatric registered nurse at Sydney Children’s Hospital for over 10 years. During that time I cared for many children with HSCR and ARM and found I had a keen interest in these conditions. In 1996 I attended a Bowel Disorders Conference in the USA and this truly sparked my desire to do more, thus my involvement with the BGK - I am a founding member. I am currently the president and also the ‘SEGMENTS’ editor. I also maintain the database. With the marvels of modern technology I am able to put the newsletter together and then e-mail it off to our printer in Sydney. I currently live in Canada with my Canadian husband and our son, Hayden.

Secretary - Eunice

My interest in the association began many years ago due to a lack of information and support offered to families who had a child born with a severe bowel condition, such as Hirschsprung’s disease or Imperforate anus. Our son Adam was born with Down syndrome and Hirschsprung’s disease in 1989. I am a registered nurse, specialised in operating theatre nursing since 1979. I have worked in many of the hospitals in Sydney including The Children’s Hospital at Westmead.

I enjoy the opportunity to learn and being part of the association has allowed me to expand my knowledge in this area. I also treasure the many friends we have made since the association began.

Currently my work involves two roles; one being tutoring medical students at the School of Medicine in the University of Western Sydney and as a clinical facilitator for the University of Technology supervising Bachelor of Nursing students on their elective clinical placements in hospital and community settings. In 2010, I began my research PhD at the School of Medicine at the Australian National University in Canberra, which has evolved from my experience within the BGK. The focus of my research is on “the role and efficacy of support groups in paediatric medical conditions”. My aim is to prove the importance of support groups and develop a framework, which will see support groups become a vital member of the treating team. Whilst the medical profession offers medical advice, support groups offer the essential knowledge and experience to help people on a daily basis, live their best life with a particular medical condition.

Corporate Sponsorship Co-ordinator & Conference Organiser  - Julie

I have the very rewarding task of being the conference organiser for the organization. I have been an active member for over 5 years. Stephen and I have a daughter Jacqueline who is almost six (as she keeps reminding us.) Jacqueline was born with Hirschsprung’s disease. My background has always been in Education and I have been working in the corporate sector as a Learning and Development manager for many years with responsibilities at an International and National level. It has been a wonderful experience being involved actively with the Bowel Group for Kids as I am constantly learning and gaining so much from the experience.

Membership Secretary - Sue

I have been involved with BGK since 1998 and I am the Membership Secretary. i have a child born with cloaca and neurogenic bladder. I spent the majority of my working life as a secretary, but my child's medical problems saw me going to TAFE to study Disability and then Family Support. I still do some work in the disability sector, but my main job is as Shift Supervisor with the Children’s Contact Service, where I facilitate supervised contact and change over contact visits between children and their parents. It has been wonderful opportunity to be involved with the support group for well over 13 years.

Wound Care Specialist - Elizabeth

My daughter Jessica was born with Hirschsprung’s disease (long segment) on 13/9/99. After searching for support, I finally came across BGK (formerly A.P.S.A.) by reading an article in the Ostomy Australia magazine. I contacted Eunice and shared my story. Since 2000, I have been a Committee member for BGK, acting as the Victorian contact for parents. I have also contributed to several of the BGK Conferences held in Sydney.

I am a Registered Nurse with extensive experience within the community setting and more recently worked as a Clinical Nurse Consultant, specialising in Wound Care. I am also an Assistant Lecturer for Monash University, teaching & supporting doctors, nurses, podiatrists & pharmacists in Post Graduate Studies in Wound care. I hold a B. Nurs., Post Grad Cert. in Wound Care I have found my skills to be invaluable in the care of Jessica but also the knowledge I have gained has helped to provide support to other parents in a similar situation.

Stomal Therapy Nurse - Tracey

I am a Stomal therapy nurse, continence consultant and wound care consultant working in Nowra, NSW. I have been a registered nurse for more than twenty five years, and in that time have worked in a variety of specialty areas, but my interest in Stomal therapy began when my daughter, Hannah, was born in 1996. Hannah has Hirschsprung's disease and neuronal intestinal dysplasia, and continuing problems have meant that she has had stomas of different sorts since she was a baby.

My husband, Tony, and I live on a small acreage in Tomerong, a nice quiet place, with room to move for our family and our three dogs.

I first joined BGK in 1997, after I met Eunice during one of Hannah's hospital visits. I have found the support invaluable, as I think we can all feel terribly alone when dealing with a sick child, especially one with a "rare" problem.

I hope to be able to help our members with practical advice on Stomal therapy issues, and the day to day problems we all experience. I have had the opportunity to speak at previous BGK conferences for parents and educators, and I am committed to public education about bowel disorders. Our new website opens another opportunity for parents and carers to share information and exchange tips and support. My hope is that, by better understanding, our children' roads will be easier.

Bowel Group for Kids Inc