Friends of Monash CF News

Christmas fair jewellery sales donated to support Monash CF community

Winter and her friend Piper (Grade 6) hand-made polymer clay earrings, rings and bracelets to sell at their end of year Barwon Heads Primary School Christmas fair. Their talents were greatly appreciated by the locals who loved their designs and creative label. They raised an impressive $200.

Winter knows all about CF and wanted to be able to raise money to support the work of the Monash CF Foundation. Winter’s friend Ethan, 11, has CF and she and her family have always played an important part of his life and have been involved in various CF fundraisers since Ethan was born. 

A big "thanks and well done" to Winter and Piper for supporting Ethan and the Monash CF community with such a generous and heartfelt project and donation.

Foundation funds donated for 2nd Gen Smileyscopes

Following a donation of $5,480 made in 2019 for the trial of the Smileyscope program, this year the Foundation donated an additional $10,000 to Monash Health to purchase another two 2nd generation Smileyscopes.  "What are Smileyscopes?" I hear you say...

Procedure related pain and anxiety [PPA] are commonly reported amongst children admitted to hospital. Strategies such as application of local anaesthetic, inhalation of nitrous oxide, sedative/hypnotic medication and even general anaesthesia have all been used in the past, with varying degrees of success. Several studies have shown that despite awareness of procedural pain amongst caregivers, children continue to report what they regard as unacceptable levels of procedural pain and anxiety. This is of significant concern as it is well known that, if poorly managed, repeated episodes of PPA in early childhood can lead to the development of life-long needle phobia.

At the Monash Children’s Hospital, they have used all of the techniques referred to above to manage PPA in children with cystic fibrosis, but results are unsatisfactory. They often need to resort to general anaesthesia for IV insertion, which is very resource-intensive and expensive.

Dr Evelyn Chan has pioneered the use of a virtual reality [VR] headset device [the Smileyscope] to manage PPA in children. The Monash CF Foundation previously supported the purchase of 2 1st generation Smileyscopes, however their use was severely curtailed due to concerns about cross-infection during the Covid-19 Epidemic.

The second generation devices now available have several new feautures including a much wider variety of experiences that are tailored for all age groups from 4 year old children to adults. The headsets are now constructed of plastic, requiring only surface antiseptic cleaning between patients. 

As the devices can now be used for children and adults and cross-infection risks minimised the Foundation was pleased to again support this project.

In June this year the Foundation co-contributed $15,000 towards a PhD clinical research project, conducted by Dr Tom Saunders at the University of Melbourne entitled: Assessing Pre-clinical Phenotypes of Adverse Cardiovascular Risk in Paediatric Cystic Fibrosis. 

Analogous adult respiratory and inflammatory conditions all carry increased risk of atherosclerosis and cardiovascular disease. Atherosclerosis is thought to be largely preventable, especially when intervention starts in childhood.  The development and risks of these conditions in CF is unknown.

Dr Saunder’s study investigates whether CF children have early preclinical characteristics, predictive of adult cardiovascular risk, such as changes to blood vessels, blood markers and immune cells, when compared to children without CF.

Dr Saunder’s will be recruiting children from the Monash CF cohort for this clinical research project.

Big thank you to  Grill’d Elsternwick for their support during the year...

Seeking volunteer Fundraising Events Co-ordinator

Due to reduced capacity of volunteer resources, the Foundation is seeking a person with the right skills and willingness to donate their time and talent to take on a volunteer Fundraising Events Co-ordinator role.

The Fundraising Events Co-ordinator would be charged with assisting to identify and arrange suitable fundraising events for the Foundation. The Co-ordinator would report to the CEO and report quarterly direct to the Board. As has been the case in the past, resources from the Monash CF Service, Monash Health Foundation, Foundation’s Board member networks, the CEO and other volunteers from the Monash CF community will be available to assist the Co-ordinator where necessary.

In addition to its yearly Cheltenham Golf Day event, it is hoped that the Foundation can run 2/3 additional events raising up to $30,000 and beyond per year. The current golf day raised $10,000 in 2021 so aiming for $30,000 is not an excessive or unachievable target.

If you are available or know someone willing to volunteer for this position, please forward a letter of interest to the Founder/CEO Felicity Stretch at fstretch@monashcffoundation.com.au. Felicity is also available to answer any queries on this position or the Foundation generally on 0414 660 941.

The appointment of this position will be at the recommendation of the CEO and approved by the Foundation Board.

The Foundation needs your help to fulfill this role please…

Due to the Foundation’s highly desired DGR status, it must continue to raise around $30,000 per year to ensure its continued regulatory compliance. In the past this has not been difficult to achieve based on the focussed fundraising events undertaken. Due to its structure and volunteer resources (the CEO and Board members are all volunteers), the Foundation operates on a very low-cost base only consuming around $5,000 per year of raised funds. Therefore, each year the Foundation aims to donate around $25,000 towards specific Monash CF community projects.

If this Co-ordinator role cannot be fulfilled unfortunately the Foundation may no longer be able to continue and sadly may close. Since the Foundation was established in 2016, it has either donated funds or facilitated projects to the value of over $130,000. Closing the Foundation, would be a significant direct loss to the Monash CF community.

As a member of the Monash CF community, perhaps you have the skills and desire to take on this volunteer role? If not, we encourage you to consider your own networks for suitable volunteers.

Monash CF Community: Please share this to your child’s/children’s educators (teachers or childcare workers) and encourage them to attend. If they would like further information, please direct them to contact the Monash CF Service (monashcf@monashhealth.org).