Accomplishments & Financials

DLG4 SHINE Foundation is committed to our mission and has made great strides in building support and awareness for our community. The items below are just a portion of our accomplishments in the first years of establishment.

Supporting collaborative research among international medical professionals:

Created an International Medical Advisory Board with members from the United States, Canada, and Denmark
Incorporated on December 29, 2021, in Ohio
Submitted our official application for 501c3 status on February 21, 2022, as a patient organization to be a partner in applications for grants and work with researchers to find out more about DLG4
Created one- and three-year foundation goals, along with a goal operating budget
Opened an ongoing Bonfire SHINE store with apparel and merchandise as our first fundraiser. Raised over $2,000 in late 2021/early 2022
Partnered with Simons Searchlight and OMIM to update correct medical information for DLG4-related disorders
Interviewed and researched four different patient registries and decided to use both Simons Searchlight and CoRDS

Nuturing a family community:

Continued to grow our private family DLG4 SHINE Facebook page
Created public pages for Facebook, Instagram, and Twitter for extended family members, friends, medical professionals, and those in the rare disease world to follow
Wrote our first quarterly newsletter to distribute electronically in Spring 2022
Collected photos of many patients with a DLG4 SHINE diagnosis to use in social media, advertising, awareness campaign

Raising worldwide awareness:

Started using and requesting families to use the #SHINESyndrome and #DLG4 hashtags on social media
DLG4 SHINE merchandise and apparel
Decided on July 17 as DLG4 SHINE Awareness Day and plans for a month-long fundraising campaign in July
Created public pages for Facebook, Instagram, and Twitter for extended family members, friends, medical professionals, and those in the rare disease world to follow