Syndromes Without A Name (SWAN) Australia

We are very pleased to present the SWAN Australia Annual Report for 2023/24. The Report demonstrates how SWAN Australia has worked hard to deliver on its mission and vision during the 2023/24 financial year. It includes details of SWAN Australia's activities, achievements and financial performance. And it features many fantastic photographs of our SWAN families, who are at the heart of all we do. The Annual Report also celebrates the contribution of SWAN Australia's funders, donors, volunteers, peer support leaders and Community Advisory Group members. The SWAN Board thanks you all for your support during 2023/24. To view the 2023/24 Annual Report, please visit: https://lnkd.in/giArjhs3 Alison McIvor GAICD Maya Pinn Heather Renton

Our last Meet The Experts Session for the year [TOMORROW]!   Meet The Experts Series: Alison McIvor GAICD (SWAN CEO) When: Thursday 14th November 8-9pm (AEDT) Come and Virtually Meet our newly appointed Chief Executive Officer, Alison. Alison has worked in a range of senior executive roles over more than 25 years - across sectors such as finance, construction, transport, education and the not-for-profit space. Importantly, Alison also has lived experience of two rare genetic conditions, so is deeply passionate about the undiagnosed and rare conditions community. There will be time for a Q & A at the end of the session. Please register to attend the session Registration Link: https://lnkd.in/gwNHNcmF

🦢 Join the SWAN Board! 📁 SWAN Australia is seeking passionate and committed individuals to join our Board and help guide our mission to support families and individuals impacted by undiagnosed and rare genetic conditions. We are looking for skills and expertise in the following areas: - Advocacy, Healthcare, and/or Disability - Fundraising Experience - Rare Disease/Lived Experience If you’re ready to make a meaningful difference and shape a brighter future for families navigating rare and undiagnosed conditions, we’d love to hear from you! 📝 Apply by emailing our SWAN Chair, Steve Robinson at [email protected] or feel free to share this with someone who would be a perfect fit. Register for the SWAN AGM here: https://lnkd.in/gxUi4S4v Alison McIvor GAICD Heather Renton Maya Pinn Emma Bonser Monica Ferrie Joel Taggart

We are excited to welcome Alison McIvor GAICD as SWAN Australia's new CEO! 🎉 Alison brings over 25 years of experience in strategy development, business planning, transformation, and advocacy across sectors like finance, construction, education, transport, and the not-for-profit space. Her expertise in project and program management, operations, and communications will be invaluable as we continue to grow and support our incredible community. Alison is also deeply passionate about the rare and undiagnosed conditions community, having served on advisory boards and committees for key organisations in the sector. We are thrilled to have her lead us into this new chapter, and we’re confident her vision and expertise will help SWAN Australia continue to provide vital support to families. Please join us in giving Alison a warm welcome! 🌟 #WelcomeAlison #SWANAustralia #Leadership #SWANFamilies #RareAndUndiagnosed

Our Seconds Fundraising Event was held (& Hosted by Maya Pinn) at Grill'd Casey Central! A massive thank you to everyone who came out to support our Fundraiser Dinner. It was a fantastic evening filled with great food, company, and most importantly, the support for SWAN families. A special shout-out to Bundy, the restaurant manager, for hosting us, and to Damien Rosario for River Gum Ward - City of Casey for the introduction and helping us bring this event to life. We are truly grateful to Bassir Qadiri OAM For Casey Council, Jamel Kaur Singh for Casey Council Waratah Ward, Samuel Dennison for Akoonah, Joby George - Candidate for Kowan Ward City of Casey and Jennifer Robson. Most of which attended both fundraisers only days apart!!!! We would like to express out gratitude and thanks to those who couldn't attend but donated to our Matched Dollar for Dollar Link through Ethical Jobs Australia. Your support helps us continue our mission of providing essential peer support, information, and advocacy for families of children with undiagnosed and rare genetic conditions. Your generosity truly makes a difference, and we can’t thank you enough for being part of the SWAN community. Stay tuned for more events, and thanks again to everyone who helped make this one so memorable! #SWANAustralia #GrilldFundraiser #CommunitySupport #Grateful #SWANFamilies

Last Sunday (13/10) We had an incredible time at our first fundraising event ( Hosted by Maya Pinn ) at DoppioZero Pizzeria, Beaconsfield! 🎉 With 4 fun rounds of trivia (Did you know Elvis was born with blonde hair? 😉), silent auctions, and some amazing prizes, it was a night to remember. We were honoured to have a special visit from Ann-marie Hermans MP, and Casey Council candidates like Damien Rosario for River Gum Ward - City of Casey, Samuel Dennison for Akoonah, Melinda Ambros for City of Casey - Kalora Ward and so many wonderful SWAN families, friends, and locals who came to support us. A heartfelt thank you to everyone who made our first fundraising event at DoppioZero Pizzeria such an incredible success! We are so grateful to all who attended and to those who donated, even if they couldn’t make it. We’d like to especially thank Brad Battin MP , Gary Maas MP , Belinda Wilson MP for donating and/or offering a prize for our Raffle! Your generosity will make a big difference in helping SWAN continue its vital work of providing support and advocacy for families of children with undiagnosed and rare genetic conditions. We are truly grateful for the love and support from our wonderful community! Damien Rosario Riley James Pitcher Heather Renton City of Casey #SWANAustralia #DoppioZeroFundraiser #Grateful #CommunitySupport #Casey

🌟 Today is Undiagnosed Children’s Awareness Day 🌟 This special day raises awareness for children living with undiagnosed genetic conditions and and Syndromes without a name. It’s a chance for us to spread the word about the challenges families face when a diagnosis remains elusive, and to reach more families who need support. 💜 Many families are still on their diagnostic journey, with some being told their child has a "variant of unknown significance (VUS)". Without further genetic testing and research, these children remain undiagnosed. This isn’t okay, and we need to push for better best practice guidelines and access to genetic testing. For so many families, finding peer support is a lifeline. On Undiagnosed Children’s Day, let’s fight together for a future where no family feels isolated, where more children can get answers, and where better care is available for those still waiting. Let’s make sure families find SWAN sooner and feel supported from day one. 💙 Support SWAN Families Today: https://bit.ly/46oW9Sh #UndiagnosedChildrensDay #SWANAustralia #GeneticTestingMatters #SupportFamilies #NoChildLeftUndiagnosed #VUS #Variant #WES #GES #RNA #rnasplicing #Splicing #Undiagnosed #Peersupport #Isolation #mentalhealth #carers #Australia

🚨 1 Hour to Go! 🚨  There’s just 1 hour left to have your donation doubled by Ethical Jobs (Up to 9k)! Every dollar you give will go to support families with undiagnosed or rare genetic conditions.  Don’t miss out on this chance to make a huge impact—donate before 12pm (AEDT) today!  👉 https://lnkd.in/gTJc67aS  Every bit helps SWAN continue the work we do! 💙 #DoubleYourImpact #SupportSWAN

‼️ Important Update from the SWAN Board ‼️ On August 9th (2024), the SWAN Board made the decision to part ways with our CEO, Jason Doherty. This decision was made in the best interest of SWAN and our valued members. We appreciate Jason's contributions and wish him all the best in his future endeavors. As we work toward appointing a new CEO, please know that I will be supported by the Board and GUARD Collaborative (GAA & GSNV) during this transition. For any communications or inquiries that would have been directed to the previous CEO, please reach out to me at [email protected]. Thank you for your understanding and continued support. Kind Regards, Maya Pinn SWAN Administration Officer Monica Ferrie Emma Bonser

Fundraising Dinner @ DoppioZero Pizzeria, Beaconsfield This Sunday 13/10. PLEASE HELP FILL SEATS! Bring a friend or family member along with you❤️ Come join us for a delicious evening at DoppioZero Pizzeria in Beaconsfield! Our fundraising dinner will be held at 10 Brunt Rd, where you can enjoy mouth-watering food and support a great cause. Bring your friends and family for a night of good food and good company. Let's come together to make a difference to the lives of Families with Children with Undiagnosed or Rare Genetic Conditions. $50pp for Table Shared Entree, Main & Dessert | Buy your own drinks at DoppioZero Pizzeria. Activites: - Trivia - Auction & More No Children - Over 16+ BOOK YOUR TICKET HERE: https://lnkd.in/gpMrGHhs If you can't attend this wonderful event, please consider Sharing Thise Event or Donating to SWAN Australia and your donation will be matched dollar for dollar (10th - 17th October) by Ethical Jobs.com.au. Donation Link: https://lnkd.in/gcA5Bp8z Maya Pinn Monica Ferrie Heather Renton Heather Wallace Danièle Noel Karen Dimmock Darren Pallant Anna Caterer Chriselle Hickerton Erin Crellin #raredisease #fundraiser #ethicaljobs #grant #wes #exome #Genetics #peersupport