At The Cute Syndrome Foundation, we believe in establishing meaningful partnerships in order to move work forward quickly and effectively--together. As a result we have formed close working relationships with several international organizations, each at various levels of establishment and formality. Leaders in each of these organizations also act in the capacity of Cute Syndrome Foundation volunteers, so that we can align our efforts easily but also encourage a focus on differing regional, linguistic, and national needs.
The Brazilian SCN8A Organization Ajude o Rafa works on funding SCN8A projects--including co-funding several grants with TCSF. In addition to the wonderful support work they do in Brazil, they also provide technology support for all of our Family Gatherings so that the meeting can be seen by families around the world.
SCN8A Italia ODV
SCN8A Italia ODV is an Italian non-profit Patient Advocacy Organization that raises awareness of SCN8A mutations. SCN8A Italia ODV is registered to the Regional General Register of Volunteers- Milano Section- Italy. Website:www.scn8a.it Facebook Page:https://www.facebook.com/scn8aitalia
Currently an SCN8A European alliance is forming. TCSF is working closely with this group, and their consituent organizations including SCN8A Italia as well as SCN8A UK and SCN8A Germany, who are formalizing their groups, in order to plan events, align goals, and support the most promising SCN8A efforts worldwide! Facebook Page: https://www.facebook.com/scn8aeurope
The Cute Syndrome Foundation is a member of a number of advocacy networks, coalitions, and organizations, including: the Rare Epilepsy Network (REN), National Organization of Rare Diseases (NORD), the Epilepsy Leadership Council (ELC), the Global Genes Foundation Alliance, and the European Rare Disease Organization (EURODIS).
We have an ongoing fundraising partnership with EFMNY to support their annual "Into the Light" Walk to End Epilepsy. In 2019 one of our own SCN8A Warriors, Luke, together with the help of his family and friends, raised over $70,000, half of which went to support The Cute Syndrome Foundation.
In 2020 the Child Neurology Foundation awarded the Cute Syndrome Foundation an Rising Tides Grant to help support our social and emotional outreach program for our SCN8A families. This program included zoom yoga, martial arts, book club, and food and drink discussion group. We were able to provide meal kits, year-long subscriptions to a mindfullness app, yoga mats, and books for families who participated in this program. Addtionally, our Founder/Director, Hillary Savoie, has been a part of several CNF video projects, including their popular video on Caregiver PTSD.
In addition to being a NORD Platinum Member, the Cute Syndrome Foundation is a recipient of a 2020 NORD Seed Grant to help support our virtual 6th Annual SCN8A Clinician, Researcher, and Family Gathering.
The Cute Syndrome Foundation has partnered with CURE Epilepsy to co-fund a Rare Epilepsy Partnership Award (1 year, $100,000) targeted specifically to SCN8A research with an anticipated award start date of Spring 2023! The purpose of this award is to support the development of necessary research tools, techniques, model systems, and data collection platforms to stimulate and accelerate research on rare epilepsies. The anticipated awardee notification will be announced before February 2023. CURE Epilepsy awards grants for novel research projects that address finding the cures for epilepsy and address the goal of “no seizures, no side-effects.”