This September, a team of Cystic Fibrosis Canada staff and volunteers came together to assemble the Newborn Resource Kits.
This initiative began through the efforts of a Helen Meinzinger, a CF parent, whose son Kaiden was diagnosed in 2009. Helen wanted to do something to help other newly diagnosed CF families, so in 2011 with funding from the Kin Canada Club of Russell, she created “Kaiden’s Care Kits”, which were assembled and distributed to new CF families in Ottawa.
In 2012, Helen approached Cystic Fibrosis Canada in hopes of partnering to distribute kits to all newly diagnosed families in Canada. The “Cystic Fibrosis Canada Resource Kit” was created following a pilot in 2013 that included feedback from nurses and families who received the Newborn Resource Kit.
The Newborn Resource Kits are designed to support families during the time of diagnosis, which many families report to be the most stressful and overwhelming point of their CF journey. Filled with reading materials on CF, as well as practical tools to help families care for their baby, the kit can help parents and caregivers to feel more confident caring for their child.
Parents and caregivers consistently give positive feedback on the Newborn Resource Kit, indicating that the kit helps them to feel less alone. One parent reported, “The kit was very helpful for our family. We are still using many of the components daily.” Another parent commented, “I am extremely grateful for this kit. For someone to provide this for my family at a point where I felt devastated and overwhelmed by my newborn’s diagnosis – it is a big blessing.”
Cystic Fibrosis Canada would like to thank Mylan for sponsoring these kits, Johnson & Johnson for donating products to the kits, and our volunteers for assembling the kits.