https://www.syngapaustralia.org/initiatives daily 0.75 2025-04-23 https://www.syngapaustralia.org/initiatives/project-one-49rhf monthly 0.5 2019-08-22 https://www.syngapaustralia.org/initiatives/project-three-6eabx monthly 0.5 2019-08-22 https://www.syngapaustralia.org/initiatives/project-two-hgbh5 monthly 0.5 2019-08-22 https://www.syngapaustralia.org/initiatives/project-four-gb49k monthly 0.5 2019-08-22 https://www.syngapaustralia.org/home daily 1.0 2025-09-29 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/4a060c5b-819f-44f4-bbb1-fabec1a1fad6/AussieSyngap2024.jpg HOME - Our mission To raise awareness of Syngap, support Syngap families and facilitate research. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1f9e37e2-490d-47ce-83ac-6bd9fb6e15fc/mcri+research+information.jpg HOME - Research partnership Read more about our latest research partnerships with Macquarie Univeristy. Murdoch Children’s Research Institute and the Florey Institute and how we are helping fund research to sure Syngap for our loved ones! https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592133334209-MJ8OBMA5A2ST18C80POR/Han%2525252Bhome%2525252Bpage.jpg HOME - Our stories Every family has a story. Here are some stories from Australian families whose children have Syngap. https://www.syngapaustralia.org/our-mission daily 0.75 2025-01-17 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1591936323821-3SGEJHAN7O4J0IID2NM4/Banner.JPG Our mission If the path you need doesn’t exist, create one - Chan Zuckerberg initiative grantee, 2019 https://www.syngapaustralia.org/what-is-syngap daily 0.75 2024-02-11 https://www.syngapaustralia.org/ourstory daily 0.75 2020-06-22 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799489241-F0H3WQGS6NFFWY9GU7GA/Weller%2Bfamily.jpg Our stories - Weller family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592120446198-0V8W71RSTMDMER06HHG8/Ind.jpg Our stories - Ind family story Ind family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592120390095-NDUOTFI0TQ5T0D8S3EVF/Williams%2Bfamily.jpg Our stories - Williams family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592644388916-13XK02241ZU67WS14LRO/Caspian.jpg Our stories - Smith family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592800190025-WP38VIWJZ73RQ2R85TJV/Rutter%2Bfamily%2Bstory.jpg Our stories - Rutter family story https://www.syngapaustralia.org/ressearch-syngap-1 daily 0.75 2020-06-19 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592537823954-UA8R0YB091SKILAE9TZU/01+Syngap+slide.PNG Syngap research https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592537964530-V827IMUONE5IYL9O6PS2/03%2BSyngap.jpg Syngap research https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592537847233-FRZ31DHEYPU4ZFMXQDDL/02+Syngap+Slide.PNG Syngap research https://www.syngapaustralia.org/our-story-inds-story daily 0.75 2023-01-19 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592039042600-E029YOVH7AUZNLDVM395/Han%2BAFO.jpg Our Story - Ind's story - Han rocking her AFO’s Han rocking her AFO’s https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592039252957-PSSS6J23X37IYRFNTLG9/Han+baby.JPG Our Story - Ind's story - She was a happy baby, fat and healthy. Hannah was a happy baby https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592039425361-OBTIQ5SFEWFJARULBWKS/Han+nice.JPG Our Story - Ind's story - Our gorgeous Hannah, 2020 Our gorgeous Han, 2020 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592538328937-LTFKJJRJL53HLZZ4ATTI/WIlliams%2BInd%2BPort.jpg Our Story - Ind's story The Williams family visiting us in Port Fairy, 2019 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592538145789-7EROTDIZAKG52YDPHVJE/Han%2Bpeg.jpg Our Story - Ind's story - Recovering from surgery, 2017 Hannah recovering from surgery https://www.syngapaustralia.org/our-story-williams-story daily 0.75 2020-06-19 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592472342900-JYE7O86R3JTS9ZWGQ8KS/Williams.jpg Our Story - Wiliams story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592472132795-C449ZNMT8ZJVQ2F9OXML/young.jpg Our Story - Wiliams story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592472294965-RK0JXI00TNLXJDVMUVR0/Jaeli.jpg Our Story - Wiliams story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592472443371-O021EZX2TRA6Q2B4OVZ8/Circle.jpg Our Story - Wiliams story https://www.syngapaustralia.org/blogs daily 0.75 2020-06-18 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592196372573-ISBXDACR6HI1VOL2DI6U/Jordyn.jpg Blogs - Jordyn’s Syngap Life Follow Australian syngapian Jordyn as her family blog about Jordyn’s daily struggles and achievements. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592472700394-P6NP24RZWV2EA3DB3G9D/Booby-Joe.jpg Blogs - Bobby-Joe Another German Syngapian living life large. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592300051392-89EC1OJLOR5O2WCHCCQ9/Lena.jpg Blogs - Lena Follow Lena living her best life in Germany. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592196409564-QRY79BSN4HJICOVV9936/SRF.jpg Blogs - Syngap Research Fund, USA Read blogs written by Syngap parents all around the world and be inspired by their knowledge, their perseverance and their love. Collated by our friends at Syngap Research Fund, USA. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592299915836-YZU7X6IXBQ30FJOD7Z16/German%2Bblog.jpg Blogs - Benni Follow the adventures of Benni in Germany. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592472854316-ZPRBVIN1FWEJT5NI8UV4/Gonzalo.jpg Blogs - Gonzalo Bermejo Super Syngap Dad Gonzalo blogs about life as a Syngap father. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592299800736-SPC56RVOFPRXLTPS8JSE/Jamie.jpg Blogs - Jamie a.k.a Minimann Learn more about the life of Jamie, affectionately known as ‘minimann’. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592196458428-F2DM93Q5ORCFVO6EPA1C/Ty.jpg Blogs - Ty’s Super Syngapian Life Follow the adventures of Ty and his family. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592213696429-I3GRFKEPWHAX28ZU6ZB8/Syngap%2Btwins.jpg Blogs - Syngap Twins Follow Syngap twins Lars and Nic https://www.syngapaustralia.org/contact-us daily 0.75 2020-06-18 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592449567652-MBUFNJOFQEWN5PCQCSR3/Ind%2BWilliams%2B.jpg Contact us L-R: Hannah Ind (7), Kelda Ind, Danielle Williams, Dali WIlliams (8) and Jaeli Williams (10). https://www.syngapaustralia.org/glossary daily 0.75 2020-06-18 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507778394-Y6H7Y1SCDC64V3XUNRMB/07+Infograph.PNG Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507652594-ULAXL2PIRERWDJ1TWZ63/02+Infograph.PNG Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507720210-DIECXLDLKB1J4QF7X31B/04+Infograph.PNG Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507737803-NVWDQU9K25T38N7QTLII/05+Infograph.PNG Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507697142-B9TD5SZWOIM6JYJ03VNH/03+Infograph.PNG Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1591870128200-7YUZWC42IH4HLLOBIP7H/Glossary.jpg Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507758211-777LS1NZUK8JPA5SKQKL/06+Infograph.PNG Glossary for families https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592507602336-S9CLG7REFYDGERKTWEGO/01+Infograph.PNG Glossary for families https://www.syngapaustralia.org/parents daily 0.75 2020-06-19 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592195543016-XZI8AQ3D2E814YD0JQGY/Jan%252Bcatch%252Bup.jpg For parents Australian Syngap catch up January 2020, QLD https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592449722852-FN6AH0XRSGNYG4EJHPVA/GETA%252B2018.jpg For parents Syngap parents meeting at the 2018 GETA conference, Melbourne https://www.syngapaustralia.org/media-1 daily 0.75 2023-01-30 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/10e17d57-8d7a-4ec6-8270-fb8d9dc08ddd/campdraft+for+a+cure+horses.jpg https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592044708591-6A3CRQIKCPOLMN2E1R4S/Hunt+grant.jpg Media - $2 Million federal grant 2018 The Williams family helped secure a $2 million federal grant which kickstarted the Australian Epilepsy Research Fund. One of the first projects of the fund was awarded to the Florey Institute to help find a cure for Syngap. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592044139596-8G6HX9MT5U5BPK8024KZ/image-asset.jpeg Media - Woman’s Weekly 2017 Read about Danielle and Danny Williams and their quest for a cure for their girls, Jaeli and Dali. https://www.syngapaustralia.org/our-network daily 0.75 2020-06-14 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592122961046-U6GRCNCFDZTADNAUPL7F/10+Germany.png Our network https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592122985008-BKBT2WQ21FKGEOIHQ08I/13+Austria.png Our network https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592123036178-1AJESZAJSFK0ZUPVIROE/12+Canada.png Our network https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592123052108-EFVNG6PAQMB8UNWPC0HV/14+Japan.png Our network https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592126146564-BFIVW0YVZVUPOAYDEY9E/Switzerland.png Our network https://www.syngapaustralia.org/our-network-1 daily 0.75 2023-01-17 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592194105053-ML7IXESP89AL90LW7XJL/geta_logo_primary_181712.jpg Our Network - The Genetic Epilepsy Team Australia GETA Co-founded by Syngap parents Danielle and Danny Williams with amazing parents of other rare genetic epilepsies. GETA’s mission is to: Get A Team, Get A Target, Get A Cure. The GETA team run annual conferences in May to educate and inspire genetic epilepsy families about precision medicine and the latest progress towards a cure for genetic epilepsies. Conferences are held in Melbourne and live streamed around the world. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592194538543-I25WH0TCR11LXPZOLD82/Epilepsy%2BFoundation.jpg Our Network - The Epilepsy Foundation (EF) EF is the auspice partner for Syngap Research Fund Australia. To establish a charity in Australia requires significant effort and cost, and we are grateful to the Epilepsy Foundation for partnering with us. EF are incredibly supportive of the Australian Syngap and GETA groups. In 2019, EF established the Epilepsy Research Fund to manage significant investments from the Australian Federal government. Syngap, Professor Petrou and Professor Scheffer have been successful recipients of grants through this Epilepsy Research Fund. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592539609939-W8JK3QUWLXB0C04V8PM7/ingrid.jpg Our Network - Professor Ingrid Scheffer Professor Scheffer is a hero to many Australian and International Syngap families. She is a world renowned research clinician, and also a tireless advocate for those who suffer from epileptic encephalopathies. We are privileged she is involved in Syngap and to learn from her. Professor Ingrid Scheffer works at the Austin Hospital and the Melbourne Brain Centre and has led the largest Syngap study and is one of the leading Syngap clinicians in the world. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592194978494-5MYKDYF32LDISTQT2M1R/The%2BFlorey.jpg Our Network - The Florey Institute of Neuroscience and Mental Health At the forefront of developing treatments and cures for many diseases, including Syngap. In December 2018, a team at the Florey commenced a research project in Syngap. Led by Professor Steve Petrou, the team are developing an ASO with an objective of curing Syngap. Watch this space! https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592196656475-LOHOSJ7NG0I2CWQY5GLW/SRF.jpg Our Network - United States of America https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592196764227-QVN7UQU2KA1BVDAMOT1B/Austria.jpg Our Network - Austria https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592197037017-BZNEC28JN6D1O9W76B1N/Germany.jpg Our Network - Germany https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592127928829-0RU5HK2NTI5UT4L0SLV0/08%252BSyngap%252BGlobal%252BNetwork.jpg Our Network - Syngap Global Network https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592196880756-0LPNCKOWDOG29DJVJRXG/Canada%2BFrance.jpg Our Network - France and Canada https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592197272232-746S63RJI29YVH6QVM2T/Switzerland.jpg Our Network - Switzerland https://www.syngapaustralia.org/test daily 0.75 2020-06-19 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592537774752-WHXTM37QMZO1H2MACPPF/01+Syngap+slide.PNG Test https://www.syngapaustralia.org/new-page daily 0.75 2020-06-20 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592643910600-BKP1SVZ85HY3BAZNUYMZ/Caspian+2.jpg Smith family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592644010745-DHJL6XBXYCR69J2NALEF/Caspian+3.jpg Smith family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592644148946-U0RHFYOM8DLQIDLE2F8D/Caspain+4.jpg Smith family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592643828890-NQJV3HX81YP6L74UPGQP/Caspian+1.jpg Smith family story https://www.syngapaustralia.org/new-page-1 daily 0.75 2020-06-22 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799197729-AXTCCDAS6MB89UCRPELT/jordyn5.jpg Weller family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799133208-1C8M2VS4USDCKPVG1QPJ/jordyn1.jpg Weller family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799174342-RKLFIXMSYUXMONAACCET/jordyn3.jpg Weller family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799155708-5POBHF7NW74TPTJBTH27/jordyn2.jpg Weller family story https://www.syngapaustralia.org/rutter-family-story daily 0.75 2020-06-22 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799992937-6VWCNOS6F1JLDD6Y9C32/Brendan4.jpg Rutter family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799816088-6N1IDNDIPNCU1ZNIZUOD/Brendan1.jpg Rutter family story https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/1592799968506-POW6J5F5O2X1UA85NNFJ/Brendan2.jpg Rutter family story https://www.syngapaustralia.org/research-updates daily 0.75 2025-09-29 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/5b5d74b2-6389-42fe-af3f-43f86645e0b1/1000034588.jpg https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/8b2b91a4-8aa8-418a-bb2c-85fbc1149f95/SRF+AU+MCRI+grant+copy.jpg Research Updates - Overview: Dr St John’s research aims to systematically examine the speech and language challenges faced by individuals with SYNGAP1 related intellectual disability. This study will utilise standardised assessments to differentiate between motor-based speech disorders and cognitive-linguistic impairments, providing crucial insights for accurate diagnosis and effective therapy implementation. “Our research is dedicated to providing families with the data they need to support their children’s communication development. We are excited to contribute to the understanding of SYNGAP1 related speech and language challenges” - Dr. Miya St John. https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/d7e45d5e-4706-4304-a203-f7d9a43da38b/SnezanaMaljevic+%281%29.JPG Research Updates - Overview: A/Prof. Maljevic’s research will investigate the impact of SYNGAP1 variants on early neurodevelopment using patient-derived induced pluripotent stem cells (iPSCs). This study aims to understand the correlation between early neurogenesis disruption and the severity of clinical presentations, potentially accelerating the development of targeted therapies. “We are grateful to the Syngap Research Fund Australia and the Epilepsy Foundation for supporting our work on this rare and devastating disorder. This grant empowers us to delve deeper into understanding the disease and paves the way for developing precision therapies that could transform lives. We are honoured to be part of this meaningful journey.” Associate Professor Snezana Maljevic. https://www.syngapaustralia.org/new-page-2 daily 0.75 2025-04-18 https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/03d4faec-7530-4298-bec0-0a1ad8d32c8c/1000008861.jpg Merchandise link https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/402d6251-47ad-4f01-95b0-b8d2e588ad0e/1000008862.jpg Merchandise link https://images.squarespace-cdn.com/content/v1/5e758e5f860b9709a0b2e892/23e389e7-9f87-4567-bd80-bd792e8e3764/1000008880.jpg Merchandise link