DOCUMENT

Kim Russell My name is Kim and I live in Christchurch with my husband Gary, my adult daughter (20) and teenage son (14). Prior to being diagnosed with Myotonic Dystrophy type 1 (DM1) in 2018, I had worked for 7 years in a special education setting. I delivered exercise programs, physiotherapy type programs, and education to children with muscular disabilities under the direction of multi disciplinary team of professionals. I was passionate about my role but due to the progression of DM1 my body was no longer able to stand up to the rigours of such work. After my diagnosis my children underwent genetic testing, my daughter came back positive. She has a learning disability, couple this with DM1 and we have a clearer picture of many of her struggles. Living with DM1 myself, alongside parenting and advocating for my daughter I feel I have good understanding of the issues faced by those of us living with a muscular disability. I now facilitate a support group run by MDA here in Christchurch. We meet the second Saturday of every month. We enjoy a chat, a laugh, a coffee and a muffin. I really enjoy meeting new people and speaking out on the issues facing people with any disability, especially muscular. Rebecca, Jessica, Joy and Kim join existing councillors John Hawkins and Francesca Herdahl-Thorsing (Central Region) and National Executive Chairperson, Trevor Jenkin. Pneumonia Vaccine Funding It is important our members stay well, particularly through the winter months. It is recommended that individuals with neuromuscular conditions receive vaccination for prevention of pneumococcal diseases, such as pneumonia, due to increased risk of not only becoming unwell but also the increased risk of complications if there is an inability to cough and clear the airways effectively. Pneumococcal vaccines are fully funded for children under 5 however government funding is not generally available for older children and adults. For this reason, you may not be eligible to receive a funded vaccine through your local general practice (GP). Because cost is a barrier to having the vaccine, MDANZ has a reimbursement programme available to members who have a neuromuscular condition. MDANZ will reimburse you the cost of receiving the Pneuomvax 23 vaccine at your local GP. Simply go online to complete the reimbursement form with your details, attach your receipt and you will be reimbursed within five working days. www.mda.org.nz/What-We-Offer/ Pneumonia-Vaccine-Funding