Application for IKEA Partnership
with
CHARGE Syndrome Association of Australasia
Date:
Friday 19 July 2013
Author:
Lisa Russell, Director
CHARGE Syndrome Association of Australasia
www.chargesyndrome.org.au
Lisa.russell@smartbusinessoperations.com.au
0418 151 405
Attention:
Richard Wilson, Sustainability Manager
IKEA Australia
richard.wilson1@ikea.com
Application for IKEA partnership – CHARGE Syndrome Association of Australasia
Lisa Russell, 0418 151 405, lisa.russell@smartbusinessoperations.com.au
Friday 19 July 2013
Page 1 of 5
Background – About CHARGE Syndrome
CHARGE syndrome is a recognisable (genetic) pattern of birth defects which occurs in about one in every
32,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical
difficulties that differ from child to child.
Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart
defects and breathing problems. They spend many months in hospital and undergo many surgeries and
other treatments; especially in their early years. Swallowing and breathing problems make life difficult even
when they come home. Most have hearing loss, vision loss, and balance problems which delay their
development and communication. All are likely to require medical and educational intervention for many
years.
However! Despite these seemingly insurmountable obstacles, people with CHARGE syndrome often far
surpass their medical, physical, educational, and social expectations. One of the hidden features of CHARGE
syndrome is the determination and strong character these people display.
It is this determination that drives the CHARGE Syndrome Association to improving the health, education
and wellbeing of children and adults with CHARGE Syndrome and supporting their families.
Eligibility
Be a registered Not for Profit with Deductible Gift Recipient status, working to address the development
of children including disadvantaged children, living conditions, health, education, early childhood
development.
Not for Profit with Deductible Gift Recipient status
The CHARGE Syndrome Association of Australasia is a registered company limited by guarantee under the
Companies Act; it is a registered charity and has Deductible Gift Recipient (DGR) status (CC29770).
Working in partnership with parents
It is widely acknowledged that parents are the most knowledgeable about their child and the practices and
surroundings that are most helpful to them. Discussions with parents reveal that they themselves become
the coordinators of their child’s services.
Parents require professionals to help them to gather and interpret information, answer questions, engage
in discussions, provide support and help in decision-making and to share their professional expertise with
the family. It is with this in mind that our services comprise programmes that address the development of
children with CHARGE syndrome, and educating parents about living conditions, health, education and
early childhood development.
Our programmes
Knowing the pressure on families with children with disabilities, the association places a large emphasis on
keeping the family unit informed, included and staying together. Our programmes are predominantly
aimed at the parents, carers and medical and educational professionals, which will in turn enhance the lives
and opportunities of CHARGE children.
Focus!
The association has recently undergone a series of strategy meetings whereby a new vigour and passion for
the organisation has come to the forefront. Subsequently, we have restructured the Board of Directors
from a flat state-based Director structure to a now more meaningful and purposeful board comprising
positions that focus on education and training, outreach, fundraising and communications.
Partnering with IKEA will mean we can implement this new structure and programmes and take CHARGE to
a new level. We believe the partnership will become the foundation of our funding strategy, and
complemented by other funding sources.
Application for IKEA partnership – CHARGE Syndrome Association of Australasia
Lisa Russell, 0418 151 405, lisa.russell@smartbusinessoperations.com.au
Friday 19 July 2013
Page 2 of 5
Be a national organisation providing services in Australia with projects that have an impact on and are
located on a local level in Sydney, Brisbane and Melbourne, ideally close to IKEA stores.
Have meaningful, varied volunteering opportunities for IKEA employees in Sydney, Brisbane and
Melbourne.
The association is managed by a passionate and dedicated committee of volunteers across Australia and
New Zealand – primarily parents of people with CHARGE syndrome, as well as medical professionals and
others who are interested in the condition. Currently the association does not operate from an office; we
work virtually via email and conference calls.
In the event of securing a partnership with IKEA, we would quickly acquire premises close to the Sydney,
Brisbane and Melbourne stores to enable close proximity for IKEA employees to visit and volunteer their
time. We would, of course (!), need to fitout the offices with suitable office furniture! – as well as purchase
appropriate technology. Establishing offices would also enable the association to expand and continue after
the 3-year partnership.
We do not receive any government funding; we rely on donations. As such, the funding provided through
the partnership with IKEA will enable the association to employ one paid person in each office who will
coordinate a range of programmes such as those listed in table below. Programme costs will include
payment for the venue, facilitator, catering, hiring of audio equipment and, sometimes, travel. The table
also shows how IKEA employees could volunteer their time to the association.
Event / Item
Target
audience
Families,
carers,
medical
professionals
New CHARGE
parents
Comments
Frequency
A range of topics presented
by medical professionals
and parents.
Every 2 years
(Oct 2014,
2016, 2018)
About CHARGE, the younger
years, medical challenges,
contacts.
1 per year /
per state
CHARGE children
and their
education
CHARGE
parents
Early intervention, choosing
the right school, getting the
assistance they need.
1 x per year
CHARGE Clinic
CHARGE
Children /
families
3 x per year
Triple P – Positive
Parenting
Programme
Parents,
carers, siblings
Family picnic
days
CHARGE
families,
friends &
carers
A combined hospital
appointment comprising
genetic testing, immunology
assessment, audio, ???. The
testing confirms diagnosis
and gives subjective
direction for future.
Currently Sydney only; wish
to expand to other states.
Parenting programme
designed around kids with
special needs; addressing
behaviours.
Informal picnic / BBQ for
families to meet and get to
know one-another, share
experiences.
Bi-annual
conference
Welcome to
CHARGE
Potential volunteer contribution
/ participation
- Sourcing items for conf. bags
- Packing conference bags
- Writing / sending newsletters
- Administration
- Help with setting up / packing
up
- Assist with looking after
children (if required)
- Administration
- Help with setting up / packing
up
- Assist with looking after
children (if required)
- Administration
N/A
2 x per year /
per state
- Help with setting up / packing
up
2 x per year /
per state
- Help with setting up / packing
up
- Assist with looking after
children (if required)
- Sourcing ideal locations
Application for IKEA partnership – CHARGE Syndrome Association of Australasia
Lisa Russell, 0418 151 405, lisa.russell@smartbusinessoperations.com.au
Friday 19 July 2013
Page 3 of 5
Event / Item
Comments
Frequency
Fathers and
brothers’
conference
Target
audience
Fathers (and
brothers) of
CHARGERs
Structured but informal
conference, mental health,
depression, bonding.
1 x per year
CHARGE Children
conference
CHARGE
children
1 x per year
Taking CHARGE –
Family Health
and Wellbeing
CHARGE
parents
Big brother and
big sister
programme
CHARGE
children
Equipment
CHARGE
children
Food subsidy
scheme
CHARGE
children
Website
Families,
carers,
medical
professionals
Designed specifically around
the complexities of CHARGE
including sensory play,
balance, dance. An
opportunity to meet other
children with CHARGE, give
the sense of a “school
camp”, inclusion, belonging,
acceptance, independence.
Taking care of the family,
health, hygiene, diet /
nutrition, exercise,
relationships, social, mental,
coping strategies.
Volunteers can be matched
with a child with CHARGE
and extend their friendship,
read books, play, shopping
etc. under supervision of
parent / carer. This will give
parents a chance to get
things done! – and give
CHARGERs the opportunity
to build a friendship.
Funding may be provided to
families for equipment such
as customized bikes,
walkers, modified car seats
etc. that is not covered by
the government.
Part payment may be
provided to families to assist
with the cost of PEG feeds.
There are costs associated
with hosting and
maintaining the website.
Potential volunteer contribution
/ participation
- Take photos
- Write articles
- Help with setting up / packing
up
- Administration
- Taking photos
- Write articles
- Help with setting up / packing
up
- Administration
Ongoing
- Help with setting up / packing
up
- Assist with looking after
children (if required)
- Administration
- Read books
- Play
- Take to park
- Shopping
- Accompanying family to
appointments
Various
N/A
2 x per year /
per state
Ongoing
Ongoing
Application for IKEA partnership – CHARGE Syndrome Association of Australasia
Lisa Russell, 0418 151 405, lisa.russell@smartbusinessoperations.com.au
- Write articles
- Update text
Friday 19 July 2013
Page 4 of 5
Be able to evaluate and measure what you do to show credible, tangible, practical results / impacts and
have transparent financial reporting.
Evaluate and measure
A business plan will be prepared showing objectives and milestones of which progress will be monitored.
Lesson plans will be developed for each programme; ensuring goals and objectives are achieved. Results
and impacts of each programme will be obtained through the following methods, and adjusted accordingly:
-
Feedback forms
Surveys
Verbal questioning (informal)
The Directors will continue to contact families and invite feedback in relation to the impact of the
programmes.
Financial reporting
Thorough financial reporting processes are in place allowing transparent accounting practice.
Financial reports can be provided as agreed and appropriate.
Conclusion
The association is excited by the prospect of partnering with IKEA over the next three years! The amazing
work that can be done to improve the lives of children with CHARGE syndrome will be life-changing – for
not only the families, but your IKEA employees.
And just imagine the promotional aspect… “IKEA are CHARGING on”!
For further information or clarification, feel free to call Lisa Russell, QLD Director of CHARGE Syndrome
Association of Australasia on 0418 151 405 or lisa.russell@smartbusinessoperations.com.au.
Application for IKEA partnership – CHARGE Syndrome Association of Australasia
Lisa Russell, 0418 151 405, lisa.russell@smartbusinessoperations.com.au
Friday 19 July 2013
Page 5 of 5