DEBRA SA News - October 2011

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SA News Update

South Australia was able to boast a highly successful year when its AGM was held in the beautiful foothills setting of Carrick Hill on Sunday 21st August last. In his President’s Report, Zlatko Kopecki referred to some of the most notable successes, including a very profitable fundraising effort, mostly due to our Treasurer, Laraine Frost, whom he congratulated for her untiring work as a fund-raising guest speaker, as well as organiser of the highly successful national Cannonball Ride carnival at its Barossa Valley destination. The
carnival provided a substantial contribution towards the overall achievement of that national fund-raiser event.

A Credit Union Lottery was also held for the first time this year, successfully raising a further $1600 for research. Other notable events this year included the agreement in principle to support the establishment of DEBRA Australia Ltd. This was done at a well-attended meeting with Project National Co-ordinator, Shay Zulpo, at the home of Public Officer Roger Trevor, a member of the Project National Committee.

Zlatko also was pleased with the SA support for the Bosnian EB family and noted the appointment of top TV personality Leigh
McClusky as our new Patron and his attendance at the Rare Diseases Symposium at Fremantle in WA.

Amazing support has been forthcoming from Chris McDermott of the Little Heroes Foundation, who is working on a trial with Zlatko which could have national benefits. He proudly announced that DEBRA (SA) has, as a first, established an in-home nursing program that will kick-start in September. After working hard with Little Heroes Foundation, he has gained their support for a three-month program in SA that could ultimately be developed into a national program. Suitable nurses are currently being recruited and it will all be funded by the Foundation.

Last year’s committee was returned to office, with the addition of Lauren Busch as Publicity Officer. Lauren is a welcome new member of the committee. A Special General Meeting is proposed for early November, when this State will formally declare its intentions in support of the aims of Project National.

Projects for the coming 12 months include International EB Awareness Week, another major lottery, support again for the Cannonball Ride and, of course, the committee will be encouraging a strong SA contingent for the significant National Conference in April next year.

Roger S. Trevor

In-home nurse care program for EB patients.

I am excited to announce that my initiative as a founder of this program is officially beginning in September 2011. My idea for the program started earlier this year and was followed by a meeting between DEBRA-SA and Little Heroes Foundation in March 2011 where Chris McDermott (Head of Little Heroes Foundation and former AFL star) had a chance to meet and chat with Kate Turner. This was followed up by a “meeting of great minds” between: Chris McDermott (Little Heroes Foundation), Prof Allison Cowin (Head of wound healing laboratory, WCHRI), Dr Lachlan Warren (Head of Dermatology, WCH) and DEBRA-SA to brainstorm on how we can best improve the services for EB children in SA. I have since made a project proposal that Little Heroes Foundation has agreed to come on board and fund our 3 month state trial in-home nurse care program.

We are proud that our close collaborations with Little Heroes Foundation and HealthCare Australia nursing agency has resulted in our first in-home nurse care program for EB patients. The nurses have been interviewed and selected with the involvement of the families and we have organised the training session for the nurses by EB specialist nurse – Ms Louise Stevens (BrightSky Australia) who has kindly agreed to help us out (pictured right). Our three month trial will start in late September, with two three hour weekly visits assisting families and EB patients during dressing changes and providing much needed respite for the family. We will have surveys in place to ensure the efficacy of the trial and hope that this will become a permanent service to most severely affected EB patients in SA. We are also working with Dr Lachlan Warren (Head of Dermatology, WCH) to establish a multidisciplinary EB clinic for EB patients in SA. We also have had discussions and pending on the outcome of the trial we hope we could take this service to the national level and directly help families in need. It has been a lot of work but I am pleased the trial is starting and I have hope for the future.

THANK YOU Little Heroes Foundation and HealthCare Australia!!
 

Kind regards
Dr Zlatko Kopecki

Below: The "Meeting of Great Minds", from top right - Michael Fitzpatrick, Dr Lachlan Warren, Chris McDermott, Dr Zlatko Kopecki, Prof Allison Cowin

Below: BrightSky EB Nurse, Louise Stevens, has begun training nurses as a part of the In-Home Nursing Program

THANK YOU DEBRA-Australia!!!

I wish to personally thank all members and DEBRA-Australia and the DEBRA-States who have donated dressings and money to help an EB baby in Bosnia. Through generous donation of dressings and $1 900 AUD we have helped family Karanovic and their baby Ema with some much needed assistance. My mother has visited the family in Sarajevo, Bosnia and they have expressed sincere gratitude for our assistance. This generous help means that baby Ema will receive the best dressings available and this should take some pressure off the parents for this year. Funds and dressings donated should cover the yearly expenses of dressings for Ema. This also highlights how fortunate patients in Australia are to have a National Dressing Scheme and access to best dressings available. Ema’s mother Ajana has send a thank you email through the DEBRA-Aus website and passed on regard through myself. The family has now been in contact with DEBRA-Croatia who will assist them in obtaining the biopsy and EB type diagnosis for little Ema. We have also advised them of the DEBRA co-coordinator in Bosnia who will help them with their future needs. I was very proud to see the international assistance and generosity for EB children in other countries where the support is not available to the same level we have here in Australia. It is great that Australia is taking this lead with helping other countries, including previous effort with Chile, and more recently with Vietnam and now Bosnia. Once again, thank you on behalf of family Karanovic.

Kind regards
Dr Zlatko Kopecki