How you have helped to make a difference! – MND and Me Foundation

How you have helped to make a difference!

03 Oct

How you have helped to make a difference!

Just over three months ago we significantly increased our service delivery capabilities by employing Sarah Durand as our first ever Client Services Manager.  Prior to joining the MND and Me Team, we had funded Sarah’s position as a Support Coordinator in our Spark NeuroCare initiative with MS QLD.  
This invaluable experience meant Sarah was able to hit the ground sprinting (not just running) and instantly provided the Foundation with a tremendously valuable resource to help us support Queenslanders with Motor Neurone Disease.
Sarah has transformed our ability to assist people quickly and efficiently.  There are many questions she can answer straight away via a phone call or email.  She a has an outstanding knowledge of the support systems available and is a strong advocate for people making informed decisions about accessing services that suits their individual needs.  
Sarah’s commitment to ensuring a quality of life for all impacted by MND is unquestionable. We have been extremely impressed with her ability to see the big picture, then work with the many stakeholders needed to deliver a practical solution whilst often facing time sensitive issues.
Your generosity and support has allowed us to hire Sarah as part of the solution to ensure no Queenslander has to face MND alone. We would like you to know what a difference she has made.


It’s time to hear from Sarah:

Looking Back on Moving Forward:  Three months in review at MND and ME Foundation.

I would like to open this reflection by paying my most humble respect to each and every stakeholder involved with this amazing Foundation. 
I send my most sincere thanks to everyone who has welcomed me, supported me, guided me and encouraged me as I stepped forward into this new adventure as the Client Services Manager at MND and Me Foundation.
So looking back, what have I been up to?  
  • I have had the great honour of working with many of the people we assist and their amazing support networks.  A core focus of my role is to assist them develop choices and gain control over the path they decide is best for them and their family. Some of whom are long standing members, whilst many others are new to the MND and Me family and just starting out on their path to living well with MND and creating their life of “New Normal”. 
  • I have attended 8 support groups meetings from Brisbane, Ipswich, Cairns, Sunshine Coast, McKay, Townsville and the Gold Coast. 
  • We have completed an update of our data base to reflect changes over time for existing members and adding in our new members as referrals are received.  These updates will allow us to better support people and improve the quality of our services.
  • With our commitment to continuous improvement, we have been busy updating and creating operational guidelines to ensure we continue to deliver quality services that are meaningful and in accordance with the Foundation’s values and mission.
  • We have extended our reach into Community based networks and engaged in some very informative and outcome focussed discussions with My Aged Care, National Disability Insurance Scheme, Community Based Palliative Care teams, Aged Care providers, Allied Health providers and various Queensland Health precincts. 
  • We have developed new and ongoing networking groups that bring together our community partner MS Queensland and our Spark NeuroCare Program teams with their respective regional Queensland Health Care Teams and specifically MND clinics.  Our drive is to develop a collaborative approach to care ensuring “No Queenslander faces MND Alone” and avoiding duplication of services delivered.
  • I have delivered much needed community education presentations to providers which we hope will raise awareness for what living well with MND looks like and the role support providers have in supporting quality of life and independence for our members.
  • We delivered a newly diagnosed information session for new members.
  • The Foundation’s iPad connect program remains very busy. We currently have over 40 iPads allocated to members, supporting them to have a voice and to remain connected to family and friends.
  • We continue to receive and support Small Grant Applications which are aimed at bridging the gaps in supports and reducing the stress of living with MND.
  • The short term equipment hire continues to support many families, bridging the gap between need for equipment and the allocation of funding. We continue to work closely with Think Mobility to get vital equipment to our members as quickly and as seamlessly as possible.
  • The Childs Play Specialist Child Counselling service continues to deliver specialist support to the children and grandchildren of several of our members. This service is crucial in delivering much needed emotional support, enabling children whose lives are impacted by MND to build their resilience and develop their coping strategies tool box just as we adults do.
  • We are very pleased to now be able to offer to Speech Pathologists, five eye gaze devices and one NeuroNode device for trials with members. We anticipate that this will assist in expediting access via appropriate funding bodies.
  •  Voice Banking support is an area we will continue to promote across Allied Health providers as we currently have greater capacity to deliver this program.
  • I have also actively participated in the recent Mindfulness for Carers workshops.
In taking time to reflect on the first three months in my new role, it has provided me with the opportunity to consider the successes we have achieved during this time, as well as identifying potential future challenges and considering strategies we will implement to overcome these challenges.


A snapshot of successes include:
  • An emergency meeting with a newly diagnosed family at 9.00am then supporting their first NDIS planning meeting on the same day at 12.30pm and achieving a great plan outcome.
  • Facilitating equipment being delivered to families the same day as Occupational Therapist request was received.
  • Helping our Spark NeuroCare Program achieve better results with MND Clients.  Spark now has 28 community based Support Coordinators from Cairns to Gold Coast supporting our members to navigate life with MND.
  • The development of stakeholder networks has improved communication and referral pathways across community service providers and the health providers leading to better results for the families we support.
  • Being recognised in the community for our expertise and receiving an invitation to address NDIS Assistive Technology Assessors at their team meeting to discuss inconsistencies, challenges and areas for improvement within the scheme when supporting people living with MND.
  • Advocating for our members by developing a submission for the NDIS Joint Standing Committee ensuring our members voices are heard in the political arena. 
Identified Challenges:
  • Ensuring we reach ALL Queenslanders living with MND across such a large geographical area.
  • Ensuring all our members have a voice and are heard when engaging with relevant funding bodies.
I would like to thank everyone who has supported the Foundation which allows us to increase the services we can provide.  Like Paul has communicated many times, I am extremely honoured in my role that I get to witness firsthand the difference your generosity makes in the lives of Queenslanders with MND.  I hope this quick overview has given you a good insight into my position.  If you ever need to speak to me, I am only a phone call or email away.
Warm regards
 Sarah Durand

Now that you have heard from Sarah here’s what our clients have to say about her:

“Sarah always goes above her role, nothing is too much trouble. She is caring, friendly, very understanding, kind and very passionate about what she does, but professional. We would have been totally lost without her and we value her continued support. We love her very much. Thank you so much Sarah.”
“MND and Me sent my wife an Angel. She freed her from a Nursing Home to be back at our home. She supported us through the NDIS. She was there for our family when she passed away. And she is still here checking on how I am going! Thank you Sarah.”
“Sarah organised a wheelchair and staff training when Roger needed to go into care.  She was never too busy to listen when we called and offered both emotional and practical support. We were all very grateful for everything MND and Me did for us during our short time of need.”
“When our worlds are turned upside down, Sarah is there with quiet compassion, kindness and a wealth of guidance and practical help.”
“She has a lovely way of helping you get active in sorting out exactly the type of services that can help you.”
“Sarah’s calmness and empathy whilst giving support makes us feel like we are not alone with our battle against the effects of MND.”
“Sarah has always been very supportive ever since we have known her and that includes her previous incarnation with Spark NeuroCare.  Sarah has been particularly helpful to us in directing us through the My Age Care minefield and showing us how to convert the package information into services. She has also made us aware of other services which we had no idea were available. Someone with her knowledge of the system is, without doubt, a great asset to the MND and Me Foundation.”
Receiving this type of feedback is very satisfying, but we need to acknowledge more still needs to be done. There are people living with Motor Neurone Disease without adequate support. 
We are committed to our core strategy to create a Queensland where everyone impacted by Motor Neurone Disease has equitable access to support services, when and where they need them.
With your help we are closer than ever before to realising this goal. We would like to thank you for your on-going support.
CEO – MND and Me Foundation