CDKL5 in Color

Rare Disease Week on Capitol Hill is happening February 24-26, 2025 in Washington D.C. Hosted by the Rare Disease Legislative Advocates (RDLA), a program of EveryLife Foundation for Rare Diseases , this multi-day event empowers participants to learn key policies affecting the rare disease community and share their stories with Members of Congress. Can't make it to D.C.? You can participate virtually! Here's the info: Feb 24 - Rare Reels Documentaries (watch on your own time!) Feb 25 - Legislative Conference Live Stream (9:00-5:00) Feb 26 - Rare Disease Congressional Congress Briefing (9:00-10:00) Link to participate: https://everylifefoundation.org/rare-advocates/rare-disease-week/rare-disease-week-attendee-corner-virtual-rare-disease-week Ready to take action? View the RDLA Action Alert Center for ways to make your voice heard: https://everylifefoundation.quorum.us/actioncenter/ We are grateful to the EveryLife Foundation for their rare disease advocacy leadership! You can...

It's National Caregivers Day. This day exists to bring attention to the significant service caregivers, particularly unpaid family caregivers, provide to our society as well as the challenges and needs of this important group. In episode 9 of the CDKL5 in Color podcast we talk with Stephanie who does her best to balance her career as a geoscientist and educator with her caregiving duties. Adaptability is the name of the game when you're a parent caregiver to someone living with CDKL5 Deficiency Disorder, and adapt she has. Stephanie's career is on a different trajectory than she originally anticipated, and in some ways she is finding new meaning in what work is valuable to her. It can be extremely difficult for many caregivers to make it work, and some caregivers leave their career completely. Did you know... According to the Family Caregiver Alliance: 69% of working caregivers have to rearrange their work schedule, decrease their hours, or take unpaid leave in order to mee...

Does your loved one with epilepsy have a Seizure Action Plan in place? It's an important tool to ensure the safe and timely response to seizures and seizure emergencies! On episode 8 of the CDKL5 in Color podcast we are talking seizure action planning and amplifying an awareness effort led by the Seizure Action Plan Coalition called " Seizure Action Plan Awareness Week ." Celebrated this year from February 10-17, Seizure Action Plan Awareness Week aims to educate patients, healthcare providers, and the general public about the importance of having a Seizure Action Plan. What is Included in a Seizure Action Plan? A Seizure Action Plan can be as individualized as necessary, but it generally includes: Basic identifying information (name, DOB) Emergency contact(s) A description of seizures (type, length, what happens) When to administer rescue medication and/or call 911 Any after care or comfort care needed What seizure medications are taken regularly Other helpful medical in...

    Advocacy doesn't come naturally for many of us, and yet it is an important skill to develop if your child lives with a rare disease like CDKL5 Deficiency Disorder. What is Rare Disease Advocacy? The goal of rare disease advocacy is to improve the lives of those living with rare diseases, irrespective of the unique disease state. Luckily, rare disease advocacy is well coordinated and strong in the United States. The leading advocacy organizations' efforts are bolstered by the support of smaller patient advocacy groups who sign on to letters of importance or take action when recruited. It's an easy way for smaller groups to engage in advocacy. Here are two leading rare advocacy organizations to know: National Organization for Rare Disorders (NORD) - You can join NORD's Rare Action Network and be connected with advocates in your home state, as well as be informed about important advocacy calls to action. Everylife Foundation - Their Rare Disease Legislative Advocate...