A Collaborative effort to advance SCN8A data between:
Wishes for Elliott and the Shay Emma Hammer Research Foundation have formalized their longstanding partnership to build a broad community of stakeholders to accelerate development of new treatments for SCN8A epilepsy.
Build a collaborative effort of researchers, clinicians, families and pharmaceutical developers to accelerate the productivity of research and development of new treatments for SCN8A epilepsy
Expand the utilization of the SCN8A registry data by researchers and clinicians and improve integration of SCN8A data across diverse research and clinical data across the globe by building a new SCN8A Global Research Collaborative
Build and expand a network of SCN8A Regional Family Networks to provide ongoing community and support for SCN8A families to accelerate the pace of new SCN8A therapies
Coordinate and support trained SCN8A Regional Family Coordinators, in both the U.S. and internationally to coordinate and collaborate in strategies to develop dynamic regional communities and amplify the voice of families in advancing the development of SCN8A treatments
Expand participation in the SCN8A Registry by providing active outreach, education, and support to families including the newly diagnosed;
SCN8A Regional Family Forums
The program will provide support for the development of a network of independent
SCN8A Regional Networks which at a minimum share a commitment to working
together to advance SCN8A treatments by helping maximize participation of families in
the vital SCN8A registry.
While the Regional Forums will independently determine their own priorities and
program activities, our partnership will support regional meet ups to help SCN8A
families come together within their region. These will be virtual in near term
although we envision support of in person regional meetings post Covid-19.
Family Assistance Program
The program will include a new Family Assistance Program to help families participating
in the registry with major financial disruptions during the global COVID-19 pandemic.
Program structure and application guidelines are forthcoming, with a
commitment to award the first grants by September 1st 2020.
Our partnership will also soon announce the details of a Gift Card program to
incentivize more completed registry submission.
We will develop a central online location for public information regarding the activities of
our partnership and support for the new SCN8A Regional Forum program. We will
Outline of upcoming events,
Updates on registry drive/achievement of completion targets,
Advance highlights of findings from analysis of registry data
Details on family assistance program
Guidelines on Setting up an SCN8A Regional Family Forum in Your Region
We stand ready to work with families in other regions and countries to become a part of
the network of SCN8A Family Forum under the FaScn8aT network. Inquiries are
welcome now to firstname.lastname@example.org.