The last week of February is Rare Disease Week, and this year's theme is "More than You Can Imagine." The IFCR is honored to share a special video highlighting our loved ones with CDKL5 Deficiency Disorder. Through acrostic poems and heartfelt statements, this video beautifully captures how these incredible individuals bring more joy, strength, and love into our lives—more than you can imagine. Thier resilience and spirit inspires us every day, and we invite you to watch, share, and celebrate the beauty they bring to the world.💚 The video can be found and shared here!
The IFCR recently held the first meeting of our advocacy team and we had a great turnout! We are excited to build this team in an effort to be come more educated, informed and ready to engage on issues that will impact our community.
This team is going to be focusing on policy advocacy and how to best advocate for the programs and services our community needs. This week, the IFCR will be represented on "the Hill!" We look forward to sharing the learnings and any calls to action with our community via a blog post. Keep an eye out for that.
Currently, there is concern about potential cuts to Medicaid and changes with the Department of Education, as both of these systems provide much needed support and programs for our loved ones. Now is a great time to reach out to your representatives and let them know your concerns. After all, they work for you.
Find your representatives by simply entering your zip code here.
If you don't want to draft letter yourself, but you want to send something, here are some simple options!
The Archas a letter asking to protect the Department of Education. This is pre-written, but fully editable, allowing you to craft your own message as well.
Want to join our Advocacy Team? Let us know by clicking below and choosing Advocacy/Awareness as one of your interests!
We are excited to share a new research opportunity investigating the accuracy of seizure classification by parents/caregivers and epileptologists. Dr. Orrin Devinsky and Dr. Dana Price with our NYU Center of Excellence will be conducting this study. This is a way to advance research from your home and will not require in-person visits! Participation is through sharing your child's video EEG's and your own home videos.
Visit our website by clicking below to learn more and about this study and other opportunities!
