Posts by Charles
Strong Bipartisan Rejection by Senate Appropriations Subcommittee to Deep Cuts to NIH and Medical Research; Directs Focus on Pediatric Epilepsies
On July 31, the Senate Appropriations Subcommittee, by a 26-3 bipartisan vote, adopted the bill providing appropriations for many health research programs so critical to continuing progress towards better treatments…
Read MoreA Devastating New Roadblock to Rare Epilepsy Care and Cures
H.R.1 also known as the “One Beautiful Bill Act” just passed by Congress and signed by the President, will bring about major changes to U.S. health care. It raises devastating…
Read MoreDEE Caregivers Share Urgent Needs for Accelerated Treatment and Improved Measurement for DEEs
On November 22nd, DEE-P Connections, in partnership with the Rare Epilepsy Network (REN), held a DEE Patient Listening session with members of the Food and Drug Administration (FDA). The session…
Read MoreWhy do I love DEE-P Connections?
Why do I love DEE-P Connections? I had never heard of a Developmental and Epileptic Encephalopathy (DEE) until we were told our daughter had one. She was just three months…
Read MoreSleep & DEEs
Listen in as as we discuss sleep issues within the DEE and rare epilepsies community.
Read MoreAre we giving sleep enough attention?
Written By Anne Thompson Heller, mom to 3yr old Jordan who lives with DEEs. How many of our kids experience sleep challenges? From what I gather – many of them!…
Read MoreTraveling with Your Medically Complex Child
This webinar is packed with great information, strategies, and tactics for traveling with a medically complex child.
Read MoreCortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)
In this webinar, you will learn more about what Cortical Visual Impairment (CVI) is, what things looks like to someone with CVI and how to manage care and adapt for…
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