Wishes For Elliott was one of the recipients of CNF’s $10,000 RISING Tides grants in 2020.
DEE-P (Developmental and Epileptic Encephalopathy-Project) Connections, from advocacy group Wishes For Elliott, is a community of Patient Advocacy Groups and families with children who are severely impacted by epilepsy. Their core focus is on serving the families whose children are most severely affected by DEEs. DEE-P Connections works with partners and leading epilepsy groups to offer carefully targeted webinars featuring experts and caregivers who provide information and shared experiences with DEE families on a wide variety of topics. The topics range from the myriad of common medical issues, ongoing care issues, family concerns and research.
“Without the grant, our work would have been stalled as outside work would have need to be taken on to support our families. This grant also allowed us the opportunity to stay home and isolate with our high-risk families and not have to be out in the community during these dangerous times. The grant also served its purpose as a bridge to more sustainable funding.” – Gabi Conecker, Wishes For Elliott
Since the CNF Rising Tides grant was funded, the organization has produced seven webinars for the community with many others in the works. Two of these were very specifically focused on COVID-19 including “Updates on COVID-19 vaccine development with special consideration for the DEE population” and “Saving Our Telehealth” which are viewable below.