by Wendy Deters, Executive Director
Dear Child’s Voice Community,
Happy Spring! This week finally feels like spring and hopefully it will stick around. The snowy days in April gave us a lot to talk about, which we love, but we’d rather be talking about sunshine and plants growing. We are hoping to grow our garden again this year at the school and have everyone experience the joy of growing and eating their own food. It is a wonderful experience for our children to learn all about the lifecycle of plants and where our food comes from. Of course, it also super fun to get messy and muddy outside too. We have a lot of exciting things coming up this spring with fundraising events, graduation practice, and special learning days at school.
I am traveling to Houston in April for annual OPTION school’s director’s conference, which is a wonderful time to connect with the leaders of other OPTION schools around the country. For those who are unfamiliar, OPTION schools are listening and spoken language (LSL) programs like Child’s Voice. The consortium’s mission is to create connections, resources, and insights that equip LSL leaders to confidently lead the communities they serve. This will be my second time at this meeting. This year, we will hear from colleagues, legislators, and researchers. I learned a great deal last year and I am really looking forward to gaining new knowledge and connections that I can bring back to Child’s Voice.
An area of excitement is in the field of gene therapy for children with hearing loss. This is another topic that I am sure will be discussed at this meeting. Recently, an experimental gene therapy treatment of an 11-year-old patient with otoferlin gene (OTOF)-mediated hearing loss was a success. This is an important first step in this type of treatment, but we do have a long way to go.
“Gene therapy for hearing loss is something that we physicians and scientists in the world of hearing loss have been working toward for over 20 years, and it is finally here,” said John A. Germiller, MD, PhD, an attending surgeon and Director of Clinical Research in the Division of Otolaryngology at Children’s Hospital of Philadelphia, and Associate Professor at Perelman School of Medicine at the University of Pennsylvania. “While the gene therapy we performed in our patient was to correct an abnormality in one very rare gene, these studies may open the door for future use for some of the over 150 other genes that cause childhood hearing loss.” (See full article here: (https://www.chop.edu/news/children-s-hospital-philadelphia-performs-first-us-gene-therapy-procedure-treat-genetic-hearing )
Some families may be wondering if this could help their child with hearing loss. At the moment this type of genetic treatment is in its early stages, so we have to work with what we have. What we do know is that we have amazing tools right now to teach children with hearing loss to listen, talk, and succeed. There is a critical period of language development in young children, from 0-7 years old, in which the brain is best positioned to learn language skills. Families who address their child’s hearing loss as early as possible with interventions such as hearing technology, speech, and aural rehab therapy are taking advantage of this magical time in development.
This is where we at Child’s Voice partner with families to give them all the skills and techniques they need to help their child succeed. We are also constantly learning and moving forward with research so that we can be here for families and answer whatever questions they may have. I am excited to see what comes next for children with hearing loss and I look forward to sharing with the Child’s Voice community. Thank you for being a part of it!
Best,
Wendy
