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| CDKL5 Voices | April 2024 |
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On The Calendar
Lots coming up for the IFCR and CDKL5! Take a look!
- April 14 - Tough Ruck fundraiser. CDKL5 parents Danielle and Frank are rucking the 26.2-mile Boston Marathon course to raise money for the IFCR. "We will carry 35lbs on our backs to represent our daughter, Rian." Click to donate in support of this incredible effort.
- April 25 - Come join us for a virtual "CDKL5 Chat" and get to know some other families facing this diagnosis. Pop in and out, it is very informal! We'd love to see you!
- May 1 - Move CDKL5 Forward sponsors due! Support our annual event by being a sponsor!
- June 1 - Move CDKL5 Forward begins! Create your page and help us MOVE 22,000 miles in June to earn $22,000! Fundraise to help us reach our $100,000 goal for CDKL5! Event page coming soon!
- June 8 - Join Team CDKL5 Riding for a Cure in Philly for the Million Dollar Bike Ride! We need riders and volunteers!
- June 13-15 - Our 2024 International CDKL5 Family Education and Awareness Conference!
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New on the Blog: IFCR's Team CDKL5 Riding for a Cure
Team Riding for a Cure is back riding for IFCR in the Penn Medicine Orphan Disease Center's annual Million Dollar Bike Ride (MDBR) on Saturday, June 8, 2024!
We asked Team lead, former IFCR board member Kristin Kozera, to share with us about the event, why this effort is meaningful to her, and how you can get involved! Riders and volunteers needed!
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Conference is Coming Up!
Registration is OPEN for our 6th International CDKL5 Family Education and Awareness Conference!
When: June 13-15, 2024
Where: Cleveland (Akron), Ohio
Click to view the draft agenda.
This event brings together our CDKL5 community of families, researchers, and providers from around the globe. Participants gather together under one roof to learn the most current information about recommended clinical care and therapeutic interventions, as well as the latest on the CDKL5 research landscape.
This in-person event is treasured by our community. There is nothing that can replace meeting face-to-face with CDKL5 experts, learning during the workshops, and spending time developing lasting relationships with other parents, attendees, and all of us at the IFCR.
We look forward to seeing you! |
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Join us on Thursday, April 25 at 6:00 ET for a "CDKL5 Chat" hosted by someone from our Family Support Rep program. This is an informal, virtual gathering. Pop in and out as needed! We know how unexpected this life can be. We would love to see you! |
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Move CDKL5 Forward Sponsors Due May 1!
We are looking for individual, family, or corporate sponsors!
Will you be one?
Questions? Email Marissa (mbishop@cdkl5.com).
Thank you for helping us Move CDKL5 Forward!
If you are planning a local walk for our Move CDKL5 Forward event, let us know! |
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Board member, Marissa Bishop, and board president, Karen Ultey, were recently featured on podcast episodes sharing about CDKL5. Take a listen! - S1:E4 of the Rarely Normal Podcast - Marissa shares about life with CDKL5, how she thinks about disability, and words of wisdom for getting involved for your rare disease.
- Episode 6 of Raring to Listen a UCB Podcast (available on YouTube) - Karen talks quality of life impacts of rare epilepsy on patient and family life.
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We know how hard life with CDKL5 can be and we are here for you whenever you need us.
Would you like to speak with a fellow CDKL5 parent who knows what you're facing? We have peer caregiver support volunteers who are available to offer a listening ear or resources that can help.
Does your loved one with CDKL5 have a sibling? Request a "VIP Sibling" kit for them! This program helps celebrate rare epilepsy siblings for the unique experience they have. |
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Enrolling CDKL5 Clinical Trials
Did you know? Our website is a great place to learn what clinical trials are enrolling for CDKL5!There are opportunities for interventional trials as well as clinical research, including ways to participate in CDKL5 research from your home, anywhere in the world! This information and even more can be found on our website. Check back frequently for updates as new opportunities emerge!
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Have you joined Connect CDKL5?
Connect CDKL5 families receive direct communication about clinical trial opportunities for CDKL5 and other information important for families.
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