2019-20 Impact Report Optimising life for people living with epilepsy and bringing epilepsy out of the shadows Our mission Epilepsy Queensland’s mission is to optimise life for people living with epilepsy and bring epilepsy out of the shadows. Our values We respect and care about those impacted by epilepsy. We are accountable for our actions, passionate, and person-centered in our approach. We value collaboration, are agile, and ensure integrity in all that we do. Our strategic priorities • Empower individuals and families • Enhance community engagement and advocacy • Ensure sustainability Directory Patron Board members Wally Lewis Charmaine Driver Chief Executive Officer Katrina Tune Helen Whitehead until 24/07/20 Andrew Barnes Chris Dougherty appointed 07/09/20 William Tuffley appointed 4/12/19 Simon Watt appointed 4/12/19 Board as at 14 January 2021 Murray Fairgrieve retired 8/1/21 Chair Sam Bryce David Bunker retired 20/1/20 Deputy Chair Kim Davis Secretary Lousie Prychidczuk appointed 25/11/20 Treasurer Kalvin Booth Chairmans Report Sam Bryce Last year our wonderful organisation again in our organisation. Her commitment celebrated 50 years of service to the people to optimising the lives of people living with of Queensland. For those 50 years we epilepsy will be a lasting legacy that our have pursued our mission to optimise life organisation can be proud of. for people living with epilepsy and to bring epilepsy out of the shadows. A lot has happened in the 12 months to June 2020 and I am immensely proud of the way In this our 51st year the Board on behalf the organisation has responded, by drawing of members, started to consider what we back to the core purpose of our existence might need to look like to be here to serve and living our values: to respect and care Queenslanders for another 50 years. The for those impacted by epilepsy, to be organisation commenced a renewal process accountable for its actions, passionate, and to evaluate our services and the impact we person-centered in its approach, and to truly have on our stakeholders. value collaboration, remain agile, and ensure integrity in all that it does. Like most organisations across the world, the COVID-19 pandemic certainly had an impact A special mention to my colleagues on the on us. It changed the way we work, the focus Board who without fail gave tirelessly to the of our activities and had some impact on our organisation during a year of change and fundraising eff orts. However, seen through big decisions that will impact our work for the lens of a renewal process, the team many years to come. Our search for a new took to new ways of working with cautious CEO coincided nicely with emerging from optimism and found a new rhythm and focus COVID lockdown and bringing together of that will serve us well into the future. the renewal process into Strategic Planning processes. We went back to the basics of Financially, our organisation remains solid understanding the needs, wants and desires with another year of surplus delivered in of our members, the epilepsy community and a very challenging environment. This is broader stakeholder groups so that we can in no small part because of the generous bring hope to the 30,000 people living with contribution of our donors. In particular, a diagnoses at the moment, and the 3,000 I would like to acknowledge the Cameron more that receive one every year. family who, in memory of their beautiful son Jack, have raised $218,675 as at 30 June, as At the time of writing this report, which is a part of Jack’s Last Gift. little later than normal, I am excited about the progress the organisation has made under Our CEO Helen Whitehead tendered her our new CEO and I look forward to seeing resignation in May 2020. Helen’s impressive the team deliver the impact people living with 28 years of service to Queenslanders in epilepsy deserve. this role will most likely never be matched Helping and Empowering Our Community Joanna and Theo’s Story Joanna’s son Theo, was diagnosed with epilepsy after what appeared to be a straight forward pregnancy and birth. Her world changed five hours after Theo’s birth when he stopped breathing and started having multiple seizures. “Newborn life is busy at the best of times, and I was navigating how to be a mother for the first time and a mother to a baby with epilepsy. It wasn’t until the dust began to settle that I realised I was struggling. Joanna rang the Epilepsy Helpline for support. She shares: “When I rang Epilepsy Queensland they We have a special relationship with a told me about opportunities to connect with other wonderful organisation that has kept us people, a wide range of valuable information as well as strong. Epilepsy Queensland armed us with fundraisers and other events to attend. I found a huge the tools, education, and courage I needed to sense of compassion and support from people in the support my son in his superhuman strength same boat and I realised that I am not alone. I felt so (he is far stronger than I’ll ever be!) Epilepsy supported and understood. Queensland has been the life ring that has “It brought tears of relief to my eyes. To find others kept us afloat.” who were happy to share their battles, I also found mothers, like me, fighting for their children. The social Joanna shares: “A potential risk of his diagnosis media community added some lightheartedness to (myoclonic seizures due to birth trauma) was what initially felt like a very dreary diagnosis. Everyone developmental delay. Theo will be two in is positive and supportive and you feel safe to share February and is very typical for his age - feisty, your story or seek guidance,” Joanna shared. cheeky and full of love! He is strong willed, which is something I can’t help but admire as “There is support all around, so don’t be afraid to it was this strength that pulled him through his use it. You will develop welcoming relationships with NICU days. Whether he is fighting for his life or medical staff, and discover a world of support if you another biscuit, Theo never gives up!” connect with Epilepsy Queensland.” Joanna is a strong advocate for raising epilepsy Joanna relayed: “Theo has been seizure-free for awareness and giving back. She has been an more than a year and has been medication-free since active fundraiser and advocate during Purple mid 2020, despite doctors predicting that he would Day and Seizure Smart September. Joanna be taking both Topamax and Keppra well into his shared Theo’s story for our 2020 tax appeal and primary school years. Now we are looking forward provides updates via social media. to integrating Theo into a full-time daycare next year, worry-and seizure free! “How blessed we are to share Theo’s inspiring story of overcoming the seemingly impossible. I We were fortunate enough to take him on his first flight hope it helps spark light and courage for others. for a Christmas holiday - a huge achievement as we In darkness there is always light (even if you felt confident to be hundreds of kilometres away from can’t see it yet, keep going!) Thank you to EQI hospital without medication. for supporting epilepsy heroes,” Joanna shared. Helping and Empowering Our Community Madaline’s Story Amy says this was a very intense time. “It was awful, everything felt doom and gloom. I had a daughter previously Madaline Guilk embodies the spirit of full of life that couldn’t get out of bed.” determination and is focused on giving back. The nineteen-year-old from Ipswich, lives It was decided Madaline should stop her medication and with a rare form of epilepsy called Jeavons resume her previous medication, and within five hours, she Syndrome and Autism Spectrum Disorder was out of Status and progressively improved. (ASD). Proud Mum Amy says: “Madaline Amy engaged with Epilepsy Queensland via our helpline. hears the word “NO” all the time but she She says: “Just to have someone to clarify things, to wants a big successful life.” understand what you are talking about without having to Madaline was diagnosed with occipital lobe explain. It helped to not feel so afraid.” epilepsy at age four, after experiencing eyelid Madaline can now focus on a brighter future. She graduated myoclonia (brief and repeated jerks of the from high school, which was not always a given due to her eyelids). Madaline also experienced absence health challenges. She has a passion for child care and is seizures and her first tonic-clonic seizure at working towards a Cert 3 in childcare qualification at TAFE. 11 years old. She is currently enjoying being on placement. When Madaline was in the final stages of “Being in a classroom environment at TAFE and having so completing her Year 12 schooling it became much going on can be hard for Madaline. She gets through necessary for her to change to an anti-seizure it with support from the NDIS and her TAFE teacher and medication with less risk to women of child- placement people are amazing. It helps that Madaline is such bearing age. a likeable person and people want to help her,” Amy shares. After starting the new medication Amy She says “The information received from Epilepsy noticed that Madaline’s eye flutters increased, Queensland helped us get funding to get Madaline the help her moods intensified and she was in and out to go to TAFE and out and about in the community.