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.