Supporting CMV Families in Alberta
Cytomegalovirus is the #1 cause of infant disability - yet approximately 90% of Canadian adults have never heard of it.
1 in 200 Canadian infants are born with congenital CM Virus. Of those, 1 in 5 will have a permanent disability. cCMV is the leading non-genetic cause of hearing loss in infants. It can also cause vision loss, developmental delay, cerebral palsy and death. CMV Canada is a national charity with a vision of eradicating CM Virus. We are completely dedicated to funding critical research, supporting families, raising awareness and advocating for change.
Families impacted by cCMV have always had very limited resources. There is a lack of awareness and funding for supports and CMV Canada is the only Canadian organization dedicated to this cause. Now, more than ever, our families need our support. Due to the COVID-19 pandemic, essential research has halted in many fields (including CMV vaccine development and management) and resources have been reallocated, leaving many families behind and without options.
CMV Canada is seeking to establish provincial chapters to respond to the needs of individual communities and health care systems. We recognize that the needs of families in Alberta may be very different from those in Ontario or the Maritimes. Our idea is simple - establish an Alberta chapter, led by Alberta-based CMV parents for Alberta-based CMV parents. We believe it is absolutely essential that these parents have a voice in our operations, and we want to give them the tools and resources they need to make a difference in Alberta.
CMV Alberta has already come so far in creating awareness and advocating for universal screening. We have met with the Medical Office of Health (pre COVID-19) and have brought them up to speed with the latest research on cCMV. As a result of getting them on our side the Healthy Parents, Healthy Children website and publications were updated to include prevention messaging. This will help raise awareness and hopefully in turn help reduce the number of children who are born with cCMV. As a result of meeting with the Medical Office of Health, we were able to meet with AHS to present the arguments for universal screening. We left that meeting with the possibility of commissioning a Health Technology Assessment to verify our arguments. With COVID 19 halting all advocacy work and supports, now is the time to get parents together to create a network for each other and a strong voice to advocate for change.
Who Will it Benefit?
This project will have a direct impact on thousands of families in Alberta who are currently coping with cCMV. It will benefit the many parents of children with special needs caused by this virus. It will provide them with a support network and resources to help them connect with local specialists who are knowledgeable in cCMV.
This project will benefit the children - those impacted by cCMV - by ensuring that they get the treatments, care and inclusion that they deserve by connecting them with other kids with shared experiences. Approximately 350 babies are born with cCMV in Alberta each year. More babies are born with cCMV than all the metabolic disorders we currently test for combined.
This project will also benefit parents-to-be. Most of us have never heard of cCMV, so there is not currently much information published about prevention. By investing in local awareness campaigns and advocacy efforts, we can help educate future parents to prevent more babies being born with these conditions. The ultimate goal is to have every baby tested for cCMV when they are born, similarly to what Ontario is currently doing, to help ensure parents are given the information they need to make the best decisions for the development of their child.