DEBRA News March 2017

Family Support Program

The National Disability Insurance Scheme (NDIS) rollout is well underway in several areas across Australia and will eventually become active in your area. This scheme will provide EB families with disability based support for those families who meet the NDIS criteria and wish to access the scheme. The scheme aims to provide ‘reasonable and necessary support for disabled people in order to live ordinary lives’ however you need to ensure you meet their set criteria. It’s important to note the scheme is disability based therefore not every EB family will qualify for the service.

For those families who have disability based requirements please familiarise yourself with the scheme registration and eligibility guidelines by visiting their website www.ndis.gov.au or call 1800 800 110. DEBRA is committed to supporting families through the NDIS process. We can discuss possible approaches with you as you develop your personalised plan and are willing to participate in phone hook-ups or meetings with your NDIS planner if you think this may be helpful.

If you have any questions about accessing the NDIS, Family Support Program, Carer respite or the Sibling support program please don’t hesitate to contact our Family Support Co-ordinator Simone on 0413 967 609

Follow Your Dreams Grant closing end of May

The ‘Follow Your Dreams’ grant, initiated by Carmel Harris, is a gateway to your dreams. Maybe you’ve always wanted to drive a Formula 1 car around the track, or see the Great Ocean Road. Maybe you dream about flying silently through the sky in a hot air balloon at daybreak. Whatever your dream, DEBRA would like to help you get there.

The annual grant applications close 31st May. Applications may be submitted at any time after the cut off date and will go into next years round. Grant winners will be announced at the AGM in September on an annual basis. Unsuccessful applicants are encouraged to re-apply again in the next round. Click here to apply today.

EB Nurse Program

The EB Nurse Program is going from strength to strength with three part time nurses now funded by DEBRA and one by the NSW Government. These lovely nurses are located in Brisbane, Sydney and Melbourne. DEBRA is also supporting nurses in Adelaide to upskill in EB healthcare to provide essential nursing support in South Australia. In 2015/2016 there were 213 patients on the books.

So what do our skilled EB Nurses get up to each year? In 2015/2016 they provided the following services:

• Organised 23 dedicated EB clinics for families to attend which involved up to 19 different multidisciplinary health professionals on the team
• Held 52 outpatient clinics
• Made 512 phone calls to families and sent 427 emails
• Attended 78 meetings with health professionals
• Sent 1427 emails to health professionals
• From first point of call the EB Nurse was in touch with new families on average of 17 hours after being notified

The Australian EB Nurses along with nurses from New Zealand recently attended the EB Health Professionals Symposium in Melbourne at the end of 2017 as they are continually upgrading their EB knowledge. Feedback from the nurses was very positive and it was a great opportunity for them to discuss the new Squamous Cell Carcinoma best practice guidelines developed in the UK.  The nurses also attended the Accidental Counsellor course facilitated by Life Line Melbourne.

Ongoing support for DEBRA from FGX

After a very successful year the Future Generation Investment Company (FGX) is expected to donate $3.82m to Australian children and youth at risk charities. DEBRA is very fortunate to be one of the chosen charities that will benefit from the fund and be supported by FGX and is very grateful for their onoging support. Last year we received $126,422 which was used to support our EB nurse program.

Future Generation Invesment Forum

Future Generation will be holding its inaugural Investment Forum in Sydney on Tuesday 16 May 2017 from 12.30pm - 3.00pm. The forum will provide investors access to exclusive investment ideas in a series of five-minute presentations from Future Generation's domestic and global fund managers. For more information and to register, click here.

About Future Generation Investment Company Limited

Listed in September 2014, Future Generation Investment Company Limited (ASX: FGX) offers investors the opportunity to gain unprecedented access to prominent Australian fund managers through a single ASX-listed investment vehicle and also support Australian charities focused on children and youth at risk. The Company offers diverse exposure to Australian equities through a range of different investment styles and strategies employed by its fund managers. Future Generation Investment Company Limited charges 0.0% management fees and 0.0% performance fees and donates 1.0% of its assets each year to Australian charities supporting children and youth at risk. The Company’s investment objectives are to provide a stream of fully franked dividends, to achieve capital growth, and preserve shareholder capital.

More information can be viewed here or via Facebook.

Research Grants

Congratulations to Dr Kenneth Pang and Dr Zlatko Kopecki who were the successful research grant recipients earlier this year. DEBRA Australia will support each project with a $30,000 grant.

Project Description: Mouse models play a key role in the study of many human genetic diseases and the preclinical development of new therapies. Currently, there are no mouse models for dominant dystrophic epidermolysis bullosa (DDEB), which is caused by mutations in the gene encoding collagen VII and can result in severe blistering disease for which there are no effective treatments. This project seeks to provide a series of new genetic mouse models for DDEB and, by doing so, should advance understanding of the molecular mechanisms underlying DDEB and facilitate preclinical testing of novel therapies.

Project Description: Skin blistering diseases (Epidermolysis Bullosa) affect 1:17,000 live births with 500,000 cases estimated worldwide. EB children experience large non-healing wounds and spontaneous skin blistering affecting 70% of their bodies. Infected wounds are a constant problem for EB patients and often lead to sepsis and death. This project aims to use novel models of bacterial wound infection to investigate the mechanism underpinning innate immune responses in fighting wound infection. Understanding how different proteins contribute to susceptibility of bacterial infections may lead to novel treatments for blistered skin in EB patients.

Other Research News

DEBRA Australia is circulating this invitation for volunteers to participate in an EB simplex trial in Sydney. Participation is entirely voluntary. The study has Ethics committee approval and its purpose is described below:

• The purpose of this clinical trial is to investigate whether sirolimus 1% cream will help reduce the calluses and blistering on the soles of the feet of people with epidermolysis bullosa simplex (EBS). Most people with EBS have blistering confined to soles of feet and palms of their hands, this can be very painful and significantly interfere with people’s quality of life. No current treatment exists for this condition. Promising findings from the USA on the positive effects of topical sirolimus 1% on a similar keratin disorder have lead us to think it may be beneficial in EBS too.
• For more information please contact Dr Charlotte Gollins at Premier Specialists via phone at (02) 9598 5800.

What's Been Happening!

Brighter Days

The buzz all started on Friday the 10th of March as the Harley Davidsons and the crowds arrived in the town of Bright for the massive Brighter Days Festival. With over 10,000 people turning up to participate in the jam packed weekend of activities, dance the night away to the likes of Chocolate Starfish and all for two special causes DEBRA Australia and SUDS Research fund. We would like to thank President Steve Dundon, Jason Reid and The Brighter Days committee and all the sponsors involved in putting on such an EPIC weekend where not only funds were raised for both charities but most importantly awareness.

Victor Harbor Half Marathon February 2017

Thanks to Andrew at the Million Dollar Run we had the Victor Harbor Half Marathon get right behind DEBRA by donating all of the entry fees and fundraising to our EB families. Simon Porteous the organiser put on a fun day for all and we were lucky enough to have the Halfpenny family and Rockstar Johnny down there on the day. DEBRA is very grateful for the $7,295.81 donation which goes towards the Million Dollar Run.

Supporters/Donations

Tough Tilly Day $15K donation / $46K raised

On Saturday 7th January Tough Tilly day was held at Morrisons Winery Moama to raise funds for DEBRA Australia & EB Research foundation. DEBRA Board member Melinda Oxford and DEBRA employee Simone Baird attended the event which was held along the mighty Murray River. Over 500 people attended the event and enjoyed an evening of great company, fine wine, lovely food whilst listening to the iconic Australian music of Boom Crash Opera, Taxiride, Choir Boys and others. The Tough Tilly Day event has contributed $16,000 from the funds raised to DEBRA Australia which will be used used to support our EB families and our Family Support Program across Australia. A huge thank you to Rory Brockwell and Ricky Robertson for coordinating such a wonderful event and supporting DEBRA Australia.

• African Violet Society Show Qld $250
• Cos Aloisio $500
• Max Towns $100
• R & C Bathern $100 in memory of Olivia
• Robert & Daphne Smith $100
• Fredrick Gordon $600
• Beryl Stenhouse $50
• Newport Ladies & Beefsteak & Burgundy Club Inc $450
• 4 Seasons Walking Group $105
• Grythorn Primary School $461.10 (in memory of Josh)
• John Laing Charitable Trust $802.27
• Victor Harbor Half Marathon/Foam  $7,295.81 (for The Million Dollar Run)
• Late Pauline Naher $5,024.59

Upcoming Events 2017

• 24^th March: Melbourne Market Golf Day
• 26th March: Run for the Eternally Brave
• 23^rd April: Starting of The Million Dollar Run (Victor Harbor Yacht Club)
• 29^th April: Melbourne Cotton Ball being organised by the EB Research Foundation (10% of net proceeds donated to DEBRA Australia)
• June: Bike for EB Europe Western Europe Bike Ride
• August: Inspire Arts Challenge Sydney, NSW
• 9^th September: BravE Butterfly Gala (Hyatt Regency Maritime Ballroom, Sydney)
• October: Dine & Donate for DEBRA
• 25^th – 31^st October: International EB Awareness Week
• 24^th - 26^th November: DEBRA International Conference (Wellington, New Zealand)

Supporters