National Volunteer Week- Arlena Musinga Kamuzima

smiling ethnic woman showing volunteer sign on red apron

UBC student Arlena approached RSSBC in 2020 just after the pandemic hit. She has been building RSSBC’s newsletter designs and sending them to all our members and supporters on a regular basis. She has found new programs to make this not only easier for the society but also more appealing for those to read and continue to stay informed. With Arlena’s help, we have been able to send out a newsletter each quarter meaning families and supporters are gathering up-to-date information about what is happening with the society and ways they can get involved. Thank you Arlena for taking the time out of your busy schedule to support RSSBC!

National Volunteer Week- Kathryn Shantora

Kathryn Shantora is the co-founder of RSSBC. She helped build the community well before RSSBC was established in 2013. She hosted/supported multiple meetings and connected with many families giving them a place to feel safe while talking about daily challenges. Kathryn’s busy schedule meant she was not able to take on a large role with RSSBC but she has always been a supporter, attending every meeting, every fundraiser and offered emotional support to all those that she met. In 2019 RSSBC was elated to hear that she was able to take on a larger role. We know we are in great hands having Katheryn as treasurer of the society.
Thank you for being such great support for all.

National Volunteer Week- Christine Little

Christine is a veterinarian by trade and has been a huge asset to our organization. She comes with a medical background and is able to put medical terminology to plain language. Christine works tirelessly on creating snapshot reports on research papers all while finding ways that RSSBC can raise funds to ensure our programs are secured. As a fundraising coordinator Christine has learned a lot this past year and a half and we hope to continue to work with her in the future.
Thank you for all your time and efforts Christine.

National Volunteer Week- Karl Lam

crop person touch palms with newborn baby on gray backdrop

Karl, a web designer and father to a child with Rett Syndrome connected with RSSBC after his child was diagnosed. He offered up his skill set to help develop a new website, promoting not only the society but to help get resources and information to families and supporters in a timely and efficient manner. Karl spent a year creating and building the new Rett Syndrome BC website. He continues blessing RSSBC with his skill set and meets regularly with the team to ensure the website continues to run effectively and has current information. Thank you so much for all you do Karl! We are forever grateful.

National Volunteer Week- Alice Wang

Alice has been volunteering with RSSBC since the summer of 2020. She was instrumental in our Rett Syndrome awareness campaign in October. She tirelessly contacted every mayor/city in which a person with Rett Syndrome lived in BC, asking for a light-up event and/or proclamation. It was because of her efforts that we had 10 locations light up around BC and received 15 proclamations. She also wrote feature stories about those with Rett Syndrome that were posted to our social media outlets in October which was seen by over four and half thousand people. Alice’s self-driven personality has been a huge assist and we look forward to continuing to work with her. 

National Volunteer Week- Leigh Anne Stitt

Entrepreneur, Leigh Anne Stitt has been volunteering with RSSBC for two years. She reached out to RSSBC after her niece was diagnosed. She wanted to help not only her niece and family but others like them. Leigh Anne accepted the Vice President position and has been a huge assist to the society. Leigh Anne brings a large company business background that has benefited the society time and time again.
Thank you, we are forever indebted to you, Leigh Anne.

National Volunteer Week- Rachel Kwong

High school student, Rachel Kwong has been volunteering with RSSBC since August 2020. Rachel has been working on perfecting RSSBC’s new website. Each week she looks at the website and ensures that it is current, appealing, and easy for all to use. Without Rachel, RSSBC would not be able to keep our community informed and up to date. Thank you for all you do Rachel! 

National Volunteer Week- Tiffany Wai

UBC student, Tiffany Wai has been a volunteer with  R.S.S.B.C. for just over a year now. She contacted the society in 2020 just after the pandemic first hit. She was looking for a way to apply her skill that would serve our community. Throughout the year she took on multiple roles such as social media marketing and newsletter writer and later became secretary on the board. 

Tiffany has been a huge asset to the RSSBC team and all the families that we serve. 

Thank you Tiffany!

National Volunteer Week

The Value of One, The Power of Many, reflects on the awe-inspiring acts of kindness by millions of individuals AND the magic that happens when we work together towards a common purpose. Therefore RSSBC will be showcasing one amazing volunteer per day throughout the week describing how their efforts have impacted RSSBC and the families we serve. 

Keep up to date by following our Instagram account at @

Easter Tips

Here is Day 4 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us!

Finally, plan ahead. You know your child better than anyone, so anticipate trouble spots before they happen. Pack a busy bag for church, seat your child far away from a well-meaning relative who’ll try and force unfamiliar foods on him, or pair your kiddo up with an understanding cousin who’ll help her navigate the kids’ table. Then relax and enjoy making memories with your family!

Keep up to date by following our Instagram account @rett_syndrome_bc