CDKL5 Canada publishes a quarterly newsletter called Rare Reality. The newsletter is aimed at creating awareness, keeping donors updated, and to provide support to CDD families. The newsletter features a “family spotlight” in each edition, new research, family conferences and events, clinical trial information, grant announcements, and more.
Please find the links to our previously published editions of Rare Reality below. If you wish to subscribe to the newsletter, you can sign up at the bottom of the website.
2026
Corrected Shop with CDKL5
We wanted to send a quick update to correct the pop-up shop link shared in our last email. It looks like the original link didn’t work as intended.
Read More CDKL5 CANADA MERCHANDISE!
We’re Back! This June, Walk Coast to Coast for CDKL5!
For the 3rd year in a row, we’re stepping up for CDKL5! From St. John’s to Victoria, our virtual walk invites everyone to join. Together, within teams, we’ll take on the challenge of walking 14,623,413 steps, covering 10,028 kilometers, and reaching 18 milestones across Canada—all in support of CDKL5 awareness and research.
Read More
2025
July
In June we hosted our second annual Coast to Coast for CDKL5. The event was a huge success and we are overwhelmed with gratitude. Once again, our incredible community of CDKL5 families, friends and donors showed up with heart, determination, and purpose. This year we had 583 active participants within 16 teams. We had 5 team finish the challenge and they managed to collectively cross the country. Those teams are Brynn Strong, Ebba's Hope, Stepping up for Madison, Rohan's Runners, and Liv for Hope.
Read More April
The Second Annual Coast to Coast for CDKL5 is almost here!
After an incredible first year, we’re so excited to bring back our Coast to Coast for CDKL5 virtual walk this June! Thanks to your amazing support last year, we had over 600 participants in teams across the country moving together, raising awareness, building community, and raising critical funds to support CDKL5 Canada. We reached our milestones and made a real impact — and now, we’re up for the challenge to do it again in year two!
Read More After an incredible first year, we’re so excited to bring back our Coast to Coast for CDKL5 virtual walk this June! Thanks to your amazing support last year, we had over 600 participants in teams across the country moving together, raising awareness, building community, and raising critical funds to support CDKL5 Canada. We reached our milestones and made a real impact — and now, we’re up for the challenge to do it again in year two!
January
The 10th Annual CDKL5 Scientific Forum, held October 28-29, 2024, in Boston, was a milestone event that brought together over 200 attendees, including scientists, clinicians, drug developers, patient organizations and family representatives. CDKL5 Canada Board Member Ange Maisano (pictured with Canadian CDD researcher Merrick Fallah) attended as a family representative, joining the largest and most impactful forum to date. The event highlighted remarkable progress in understanding CDKL5 Deficiency Disorder (CDD), with key breakthroughs shared about the biology of CDKL5 and its role in sensory function and immune response. Researchers introduced CDKL2 as a promising therapeutic target and explored the heightened inflammatory responses to viral infections that may explain some of the GI pain and sensory challenges faced by individuals with CDD.
Read More
2024
October
Fundraising takes many forms and serves many purposes. There is fundraising for school and sports teams, crowdfunding for families facing a difficult time or loss, and of course fundraising to support charities, like CDKL5 Canada. Fundraising for a grassroots, volunteer organization like ours, is powerful.
Read More CDKL5 GRANT ANNOUNCEMENT & RESEARCH UPDATE
At a recent international symposia held in Toronto, Dr. Jaideep Bains, a prominent Canadian neuroscientist who is the Director of the Krembil Research Institute, opened the meeting by iterating that “research may not be able to cure all diseases or conditions, but without research there will certainly be no discovery of new treatments or cures”.
Read More July
June is CDKL5 Awareness Month. This year we decided to try something new. Instead of hosting a gathered walk and raising money in one community, where families out of province can't participate, we decided to host a country wide virtual event. Coast to Coast for CDKL5 required families to create teams with up to 50 participants to walk all month long. Participants counted their steps through our Big Team Challenge app with the goal of collectively walking Coast to Coast from St. John's to Victoria! This event was a huge success. It has shown us that when we come together, we can achieve remarkable things.
Read More April
It's almost time! Get ready, we're walking Coast to Coast for CDKL5! This is a month-long fundraising event aimed at raising awareness and funds to support CDKL5 Canada. We are hosting a virtual walk from St. Johns, NL to Victoria, BC, which everyone to participate in. We are challenging teams to collectively walk Coast to Coast and reach 18 milestones across Canada in the month of June. The money raised from this event will support our mission to continue to fund innovative CDKL5 research, to support CDKL5 families and help provide a brighter future for all impacted by this devastating diagnosis.
Read More
2023
October
In September 2023, Jill Copithorne of CDKL5 Canada had the privilege of attending the 2nd Asia CDKL5 Workshop held in Tokyo, Japan. This event was a significant gathering of clinicians, researchers, families, caregivers, and advocates from around the world, all focused on CDKL5 Deficiency Disorder (CDD). The conference aimed to foster collaboration, share research findings, and build a strong community of support for families dealing with CDD. The two-day event featured a hybrid format, with the first day dedicated to scientific updates and the second day focused on families, treatments, and pharmaceutical updates.
Read More April
The CDKL5 Canada Walk for a Cure is back and scheduled for June 17th, 2023. We are so excited for our first gathered fundraiser since the pandemic! The event will take place in Thornbury, Ontario at the Bayview Park Pavilion. We will have live entertainment by Bored of Education, AXED mobile axe throwing will be in attendance, and we will have a Canadian CDKL5 Scientist Dr. James Eubanks present a CDKL5 research update. There will be swag bags, lunch will be provided after the walk, and there will be lots of incredible raffle prizes.
Read More
2022
December
The 2022 CDKL5 Scientific Forum hosted by the LouLou Foundation took place on November 7th & 8th in Boston, MA. It was the first time the international CDKL5 community was able to gather in person since November 2019. It was wonderful to see so many familiar faces representing family advocacy groups from around the world, as well as spending time face to face with clinicians, researchers, and pharma. It truly is a wonderful thing to have so many individuals, with such diverse backgrounds, all in the same room, working towards the same cause.
Read More September
On June 17th & 18th, CDKL5 Canada proudly hosted their first CDKL5 International Family Conference. The conference was a huge success! We had to host virtually due to the uncertainty of the pandemic, however, it made the conference accessible to families and supporters from around the world. An unexpected silver lining! In addition, we were able to record the presentations so that those who were unable to attend the conference live, will be able to visit our website and view any or all of the presentations. It will be a great resource to come back to for families as various symptoms or challenges arise.
Read More May
The CDKL5 International Virtual Family Conference is only 5 weeks away! We are so excited for this event and are working hard to make sure that everyone in our CDKL5 community can benefit from this experience. Our conference is named "Families United", with the hope that this virtual event can unite CDKL5 families from around the world. We now have 14 confirmed speakers, each focusing on a different aspect of life with CDKL5. Some of the topics that will be presented include, SUDEP, the management of symptoms such as Gastrointestinal Issues and CVI, the use of specialized therapies, medical marijana, nutrition, research updates, and more. The conference will stream live on June 17th (CDKL5 Awareness Day) and June 18th. There will be an opportunity for questions to be answered at the end of each session so be sure to tune in live!
Read More January
Everyone here at CDKL5 Canada is excited to announce that we will be hosting the CDKL5 International Family Conference this June! Unfortunately due to the unrelenting Covid-19 virus, our conference will be virtual this year, however, there are always silver linings. Because the event is going to be virtual, everyone who wants to learn more about CDKL5 Deficiency Disorder can join! The conference will steam live beginning on Friday, June 17th (CDKL5 Awareness Day!) and Saturday, June 18th, 2022. We will provide links so that anyone interested can tune in live, and then we will post the presentations on our youtube channel following the event!
Read More
2021
2020
November
It goes without saying that Covid-19 has significantly impacted each and every one of us in our daily lives, regardless of age, health, or location. It has had perhaps the most significant impact on the way that we engage with each other. In the rare disease world, so much of our communication, advancements, fundraising, friendships, and support come from large group gatherings and conferences. Needless to say, in a world full of doctors, researchers, and families of medically complex individuals, this has not been happening. However, our CDKL5 community has carried on regardless of Covid, just like everyone else.
Read More May
At the beginning of April, CDKL5 Canada launched Raw Talk, a new video awareness initiative. The Raw Talk videos will be raw and unplugged and will be sent in by families not only in Canada but from around the world. The videos aim is to present varied topics relating to CDKL5 Deficiency Disorder (CDD), and the journey that the families and the CDD community take. Every few weeks a new topic will be chosen and a request will be posted in the facebook support groups for video submissions. The hope of this initiative is to raise awareness of CDD and to give families another platform to become involved and support others on this journey. We also hope to offer our supporters a glimpse into the reality of living with CDD.
Read More February
In November the 5th edition of the CDKL5 Forum in Boston. The Forum is an annual meeting hosted by the LouLou Foundation where scientists and drug developers working on CDKL5 deficiency, together with representatives from patient organizations, meet to discuss the latest advances.
Read More
2019
October
The Spence family hosted a Pancake Breakfast fundraiser on Sunday, October 20th in support of CDKL5 Canada. The Spence's daughter Gracie has CDKL5 Deficiency Disorder (CDD) and they live in Winnipeg, Manitoba with their other two daughters. At their fundraising event, they raised over $3,000 for CDKL5 Canada!
Read More July
June was CDKL5 Awareness month! Families across Canada and around the world used social media to create awareness through educational posts and pictures of children affected by CDKL5 Deficiency Disorder (CDD). June 17th marked CDKL5 Awareness Day and we had many of our landmarks illuminated green to further our awareness campaign for CDKL5. Some of the Canadian landmarks included the CN Tower, the Peace Bridge, Niagara Falls, and the Toronto sign.
Read More May - Volume 1
The 2018 CDKL5 Canada Walk for a Cure was a huge success. This year the walk was held
in Thornbury, Ontario on Saturday, October 6th. The event drew just over 150 people and
raised just over $32,000 all benefiting CDKL5 Canada!
Read More