DLG4 SHINE Foundation Partners

Billy Footwear

Billy Footwear focuses on universal design to make shoes that are functional, fashionable, and inclusive for everyone. In addition to making this great product, they offer a partnership opportunity through which DLG4 SHINE Foundation earns a 15% commission on any purchase made using our unique link (currently only applicable in the US online store): https://billyfootwear.com/?ref=DLG4_SHINE

Candid

Guidestar is dedicated to raising visibility of nonprofit groups to potential donors. By fostering this partnership, DLG4 SHINE Foundation increases our opportunity to be seen by large donors or matching programs. DLG4SF (previously named SHINE Syndrome Foundation) achieved Silver Transparency status with Guidestar in 2022, Platinum in 2023 and 2024, and maintains its profile to provide clear and transparent details on our organization and efforts.

Children's Hospital of Philadelphia

Children’s Hospital of Philadelphia is supporting DLG4 SHINE research efforts by conducting a genotype/phenotype study to better understand the link between the genetic variants and the symptoms of this rare disease.

Citizen Health

The goal of Citizen Health is to empower patients to drive their care and research through their own health data and accelerate treatments for those who need it most. Citizen is a secure digital platform which allows patients in the United States to store and keep control of all of their existing medical records, at no cost. Patients can also share de-identified and summarized medical history with researchers through their account, thus helping us gain a better understanding of DLG4 SHINE and getting us closer to disease-modifying treatments.

Combined Brain

The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders, aka COMBINED Brain, is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurological disorders by pooling efforts, studies, and data. DLG4 SHINE Foundation (then SHINE Syndrome Foundation) joined COMBINED Brain in 2022 in order to connect with willing researchers and clinicians, increase collaboration opportunities, and gain access to additional resources to speed up the discovery of treatments for DLG4 SHINE.

Give Lively

Give Lively is a a powerful and practical fundraising platform that is free for nonprofits and intuitively easy to use for donors. It has been our fundraising platform since the inception of the Foundation and serves us greatly by offering an easy, trustworthy, and secure way to receive our supporters’ generous donations.

Global Genes

Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. Their mission is to provide patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core. DLG4 SHINE Foundation (then SHINE Syndrome Foundation) joined Global Genes in 2022. Various members have since attended the 2022, 2023, and 2024 Rare Advocacy Summit which has allowed us to connect to many stakeholders and leaders in the rare disease space and create crucial meaningful relationships.

NORD

DLG4 SHINE Foundation (previously SHINE Syndrome Foundation) has been affiliated with NORD since 2022 and maintains Platinum status! As a member of NORD, DLG4 SHINE Foundation has access to various resources and benefits, including support for research, access to NORD’s expertise in growing our community, opportunities to gain funding for conferences or events, sharing with dozens of other rare disease Patient Advocacy Groups, and more!

Rare Epilepsy Network

The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy. REN is a volunteer network that welcomes all rare epilepsy organizations to come together around collective research efforts to improve the lives of their individual constituents. REN includes rare epilepsy organizations and broad epilepsy stakeholders committed to this common mission. DLG4 SHINE Foundation (then SHINE Syndrome Foundation) became a member of REN in October 2023 to help find and share more resources for the epilepsy patients in our community.

SAMi

SAMi is a nighttime movement monitor appropriate for all ages. It was purpose-built to watch carefully for seizure activity at night without compromising sleep or safety. SAMi is customizable and the device can also automatically record HD video/audio of any motion throughout the night, which can be reviewed or shared with a doctor.
SAMi has been a faithful partner of DLG4 SHINE Foundation for a few years. They have provided support to our mission through both monetary and in-kind donations, as well as directly to our community by offering a 10% discount to the DLG4 SHINE patient population.

SIMONS Searchlight

Simons Searchlight‘s mission is to shed light on neurodevelopmental disorders by collecting high-quality, standardized natural history data and building strong partnerships between researchers, industry and families. DLG4 SHINE Foundation (then SHINE Syndrome Foundation) joined Simons Searchlight in early 2022 and has since continued a close partnership to gather quality data towards a better understanding of DLG4 SHINE while supporting their purpose of gaining a better overall understanding of all neurodevelopmental disorders.

University of Copenhagen and Rigshospitalet

Rigshospitalet and the University of Copenhagen have been one of the most crucial partners for the Foundation thanks to the commitment and dedication of Dr Zeynep Tümer and PhD student Amanda Levy. They have been champions for DLG4 SHINE research by rallying other medical professionals and scientists and maintaining a very close collaborative relationship with the Foundation and the patient community.