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Headlines 9 Our supporters are how we are able to fund ground-breaking research into the 700+ neurological conditions that exist. Without their generosity and support we couldn’t do what we do, and we would like to say thank you in a unique way. We want to champion our supporters and tell their stories about why they donate to the Neurological Foundation. We want our readers to feel as connected to our supporters as we feel all the time and share why our supporters donate to the Neurological Foundation. Meet Rosie Bellamy-Lusty, who is one of our supporters based in Taupo where she lives with her two-year old daughter Aurora, husband, dog and two cats. She is currently working as a part-time hairdresser in Taupo where she is enjoying renovating her first family home with her husband. Rosie was born and raised in the Hawkes Bay region though, where she first learned about the Neurological Foundation, “I heard about the Neurological Foundation when I was around 14 years old (2002), when my Nan was diagnosed with Huntington’s disease. My parents began some research which led me to do the same as I got older.” Huntington’s disease is a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition). This condition is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. An affected person usually inherits the altered gene from one affected parent. In rare cases, an individual with Huntington disease does not have a parent with the disorder. 1 At the age of 18 Rosie started the process of being tested for the Huntington’s gene so she could plan for her future. By the age of 21 she had a positive test result showing she had the gene for Huntington’s disease. Rosie’s family including her dad, aunt and two of her three cousins have also been diagnosed through the same testing, “Because of this, we chose to do IVF treatment with preimplantation genetic diagnosis (PGD), which is genetic testing of the embryo, to conceive our daughter so that she does not carry the Huntington’s gene.” Rosie’s and her family’s future has changed drastically since their Nan’s diagnosis of Huntington’s disease almost 18 years ago, which is why they began to donate to the Neurological Foundation in the first place. “While I have always thought it was an amazing charity, I started donating once the Huntington’s diagnosis was made in my family. It covers so many life changing disorders, that many do not understand, so I feel all the work they do is worth every penny. Seeing the work the doctors and scientists are doing really makes what is a pretty horrible situation seem a lot more positive for those of us who are living with a neurological disorder. Knowing that they are working on a cure or treatment makes me carry on each day knowing that I will hopefully be able to live a full life with medication or treatment.” The Neurological Foundation provides hope for people like Rosie living with a neurological condition. Ultimately, one of the main outcomes Rosie hopes to happen with her donations to the Neurological Foundation is a potential therapy or treatment, “I would love to see a treatment so that people like me and my family are able to live with Huntington’s disease and other disorders with the help of gene therapy or medications, if not a cure.” And although the outcome for Rosie was not positive initially, she adjusted her life to fit her neurological condition, and has made the most of her diagnosis, living each day to the fullest. “I have my moments where I think my Huntington’s is a death sentence, and it took me a long time to decide if I should have children, knowing I will get sick when I’m older. But I have made the decision to turn this into a positive, teaching people what it is, how it affects us and how people can help by showing understanding. If I can help one person understand Huntington’s, and in particular the PGD treatment, which I’m particularly passionate about, then I will be happy. If I sit around and wallow in self-pity, the Huntington’s disease wins.” Thank you to Rosie and her family for sharing their story with us. It is people like Rosie who are our inspirations to keep funding research into neurological conditions like Huntington’s disease, and hopefully make change happen for the future of those living with a neurological condition. “Our brains are so important, they run our lives, and can make life very hard when they aren’t functioning properly. We need all the help we can get to continue to research and fundraise.” If you would like to share your story like Rosie has, please send an email to our Headlines Editor at: marketing@neurological.org.nz or mail us your inquiry with your phone number to: Neurological Foundation of New Zealand PO Box 110022, Auckland Hospital, Auckland 1148 Attn: Headlines Editor and someone will be in touch. 1 www.ghr.nlm.nih.gov/condition/ huntington-disease#inheritance