Josh’s Journey

We are very happy to introduce a new ongoing segment in our news! Josh McCulloch and his family have currently embarked on a journey across Canada in their RV. Josh and his wife have two kids, and one of them, June, has Rett Syndrome. Josh has given us permission to share his story and we are excited to post their updates and follow their adventures!

Sincerely,

The Rett Syndrome Team

May 9

From Josh:

Things are starting to feel very real! We have been filling our storage locker, selling off items we don’t want to keep, and generally purging. We’ve been madly ordering items we need for the RV, and trying to figure out storage, organization, and overall details for living in an RV full time.

Next week is my last week at work. The following week June goes to Canuck Place while we finish packing up, and after that, we’re out of our house and off on some sort of an adventure. Honestly, it’s been a bit anticlimactic – with the pandemic and current travel restrictions we really aren’t sure where we’ll be in a few weeks, and for us, part of the fun of travel is anticipating what’s coming. We’ve had to make a couple of different backup plans in case restrictions continue or change, but we know we’ll have lots of fun and make lots of memories.

Last weekend we got out on our first test trip with the new rig. While there were some hiccups and challenges, overall it went quite well and everyone had a good time!

Next week is full of various appointments for June, including one with an Ear, Nose, and Throat specialist we’re very much looking forward to. For years now we’ve always thought June’s internal bleeding has been coming from her stomach and esophagus. But with a recent endoscopy showing nothing significant (again), and some other clues suggesting her nose, we are now quite suspicious that June’s sinuses might be the source of the bleeding. She’s had a couple of days this week with full bags of blood draining from her stomach, so we’re hoping this appointment helps us get to the bottom of this!

iPad Raffle!

It’s finally here! Our annual fundraiser is up and running, however, this year it looks a bit different!
This year you can purchase your tickets online! No more need for paper booklets, collecting change, and mailing checks. Simply follow the link, purchase your tickets and share this post with all your family and friends! This fundraiser offsets all or most of our operating costs all year so we need to make it a huge success, please share this link as much as possible and good luck to everyone that enters.

https://rettbc.rafflenexus.com/

AGM Reminder and Itinerary

AGM 

May 2nd @ 7:30pm via Zoom 

Please join us for our annual general meeting. All members need to attend this ONE meeting on an annual basis to ensure we can continue to support families. This is your time to ask questions and have your voice heard. So far all those on the board would like to carry on their titles and duties. However, if you would like to put your name/skillset forward we would be extremely grateful and welcoming. The Value of One, The Power of Many. Please contact info@rettbc.ca for the Zoom link!

Note: This AGM is for mostly incumbent members and families of RSSBC. If you have any questions contact info@rettbc.ca also.

Here is the itinerary so you know what will be happening!

RSSBC AGM 2021 Itinerary

  1. Approval of Minutes
  2. Approval of Agenda
  3. President’s Report by Christinea Walker (year in review, goals for the future)
  4. Vice President’s Report by Leigh Anne Stitt
  5. Treasurer’s Report by Katheryn Shantora
  6. Fundraising Coordinator Updates by Christine Little
  7. Voting of Board Members
  8. New Business
  9. Next Meetings

Hope to see you there!

-The RSSBC Team

National Volunteer Week- Vivian Hou

UBC student, Vivian Hou, reached out to RSSBC in June of 2020 to offer her amazing drawing/sketching skills. Vivian spent months creating a new tool for children to understand why their peers are both similar yet different. This amazing tool was built into a coloring book that can be used in both school or community engagement settings. To view Vivians amazing work, please click on the link below to download. Thank you Vivian for your amazing talent and dedication. 

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 @
rett_syndrome_bc

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

Easter Tips

Here is Day 3 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!

Go candy-free. Children with special needs often have some sort of food restriction. Eliminate the issue by filling your Easter eggs with toys instead. Consider fidget toys, bubbles, Silly Putty, pencil grips, novelty erasers, toy cars, ear buds, balls, money, and Lego figurines. If you’re giving a treat to a child on a special diet, be sure to run any food items by mom and dad first to make sure it’s not on the restricted list.

Keep up to date by following our Instagram account @rett_syndrome_bc

Easter Tips

Here is Day 2 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!

Adapt your Easter Egg hunt. No one is less happy than a kid with an empty basket at the end of an Easter egg hunt. While it may be tempting to hover nearby and help your child find his eggs, there are ways to adapt your hunt so he can be successful on his own. The first step is to lay out the rules: Everyone stops after finding X number of eggs, which gives slower children more time to look for their eggs without fear of them all being found. Or try assigning each child their own colour to find. Talking eggs give an additional auditory clue and are also great for kids with visual impairments. One of my favourite home visit activities this time of year is an egg hunt inside a sensory bin (usually rice). Because it’s one-on-one, each child has as much time as they want to find their eggs and it’s an activity that is easily adapted to each child’s needs.

Keep up to date by following our Instagram account @rett_syndrome_bc

Easter Tips

Here is Day 1 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!

Put down that Easter bonnet. The adorable smocking on that fancy Easter dress or the stiff dress shirt and tie might feel a little itchy to a typical child, but to a child with sensory issues who over-registers sensations, it could very well be unbearable. You might be able to compromise by letting her wear a favourite t-shirt underneath or letting him wear his Superman socks. But if not, you might just have to let it go. If you just can’t bear to let her wear her beloved sweatpants today, at least pick out an outfit that’s soft and comfortable. Make it special by choosing holiday colours or adding holiday accessories.

Keep up to date by following our Instagram account @rett_syndrome_bc

Virtual Family Social

Join us for our virtual family social on Wednesday at noon!

Date and Time: Wednesday, March 24, 2021 at 12:00 pm

Location: Zoom

Zoom Link: Contact info@rettbc.ca for the link and more information

If you have any questions or concerns, please contact info@rettbc.ca also.

Keep up to date with family socials like this one and what we’re up to by following our Instagram account @rett_syndrome_bc

Hope to see you there!

-The RSSBC Team

Welcome to our new website!

Christinea Walker

I would like to take a minute and say thank you for visiting our website. Learning about Rett Syndrome can feel daunting regardless of the reasons you are doing so. However, know that you are not alone. We at R.S.S.B.C. are here to support you whether you have a relative with Rett Syndrome, are a friend supporting a family with a child with Rett Syndrome,  are seeking volunteer opportunities or you simply just want to learn about it. 

Whatever the reason we thank you for taking the time to learn more about Rett Syndrome. This disorder is complex and changes lives but we have seen some amazing resilience grown from it. Not just in the children affected by it but rather their entire communities, including parents, siblings, relatives, friends, teachers, therapists and so many more. Each child is unique and special just like all of us. Their journeys may look different and take a few extra twists and turns but all any parent wants is for their child to be loved and included within their own communities. If you are reading this website and letter, you are part of that community for someone very special regardless of whether you know them yet or not. 

Our website was built to allow anyone to access information about Rett Syndrome, our society and resources that families can take advantage of. If after looking on our website you still have questions we encourage anyone to contact us. We would be happy to speak to anyone interested in Rett Syndrome.

Christinea Walker
President