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| CDKL5 Voices | October 2023 |
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Now Enrolling in North America - CANDID
A message from Xavier Liogier d’Ardhuy, PhD, of the Lou Lou Foundation:
Dear Families,
LouLou Foundation on behalf of 7 Pharmaceutical companies is carrying out the CANDID Study (Endpoint Enabling Study in Cyclin-dependent kinase-like 5 Deficiency Disorder (CDD)).
The primary objective of this study is to evaluate the feasibility and suitability (i.e. number of tests completed, number of subjects completing the tests, subject retention, etc) of neurocognitive tests and functioning questionnaires in the CDD population with the aim of identifying relevant endpoints for future clinical trials. This is an observational study without investigational drug or blood tests. The CANDID study is ongoing in Europe (41 patients already enrolled) and we are thrilled to share that the following Clinical Sites are opened for enrollment in North America:
- Dr. Marsh, Children's Hospital of Philadelphia
- Dr. Olson, Boston Children's Hospital
- Dr. Price, New York University
- Dr. Rajaraman, UCLA Mattel Children's Hospital
- Dr. Standridge, Cincinnati Children's Hospital Medical Center
- Dr. Demarest, Children’s Hospital Colorado
- Dr. Pestana-Knight, The Cleveland Clinic
- Dr. Suter, Baylor College of Medicine
The study will finish enrollment in just a few months and your participation is critical for understanding the condition better and getting ready for future drug clinical studies. The Study provides for travel, hotel stay (if needed) and other expenses reimbursements. |
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Call for Volunteers!
2024 CDKL5 Conference Planning Committee
Are you interested in working with our team to plan for our upcoming "International CDKL5 Family Education and Awareness Conference" in Cleveland, Ohio? Please fill out this Google Form and we will be in touch! |
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Old Car Got You Stuck? Donate it!
We have paired up with C.A.R.S. to make donating your unwanted car (or other motorized vehicle) simple, easy, and free to you!
Vehicle donations are tax-deductible and all vehicles are considered! Running (or not) cars, trucks, trailers, boats, RVs, motorcycles, campers, off-road vehicles, planes, heavy equipment, farm machinery, and most other motorized vehicles!
Contact C.A.R.S and get rid of that unwanted vehicle today!
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October 17 | 11 am ET - Join us for a "CDKL5 Chat" over Zoom. This is an informal (come in and out as needed) opportunity to meet other CDKL5 parents, ask questions, and share together. Click to register.
October 29 | 12 pm PT - We are looking forward to seeing families at our final CDKL5 Family Meet-Up of the year happening in Anaheim, California! Please reach out to Karen (kutley@cdkl5.com) with questions.November 8 | 7 pm ET - Join Marinus for an educational webinar to listen, learn, and ask questions about Ztalmy. This virtual program will include education from a healthcare provider, as well as real experiences related to diagnosis and treatment from a caregiver of a loved one living with CDD and prescribed Ztalmy. Click to register. |
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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 support volunteers who are available to offer a listening ear or resources that can help. Email FSR@CDKL5.com. |
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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 families receive direct communication about clinical trial opportunities for CDKL5 and other important information important for families. Join today! |
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