FAMILY COVID-19 RESOURCES

Continuity of Care RARE Patient Impact Grant Program

Through the generosity of Global Genes, the SATB2 Gene Foundation has been awarded $12,500 to support the needs of our patients and their families, impacted by COVID-19.  The purpose of this grant is to distribute continuity of care financial support to rare disease families in need during the COVID-19 crisis. Supporting SATB2 patients and families is one of the key pillars of our mission. We are pleased to be able to offer this support to our families.

Priority areas of approved financial support include providing patient access to educational/distance learning support (ie: tutoring, technology access, internet access), telehealth access, social support access, and career counseling resources (ie: internet access, smart phone/tablet access, etc.).  Basic living expenses (such as groceries, rent, utility assistance) and transportation costs to medical appointments are also included.  This award is open to US and international families.

Funds may not be utilized for medical expenses including medical bills, dental bills, insurance premiums, copayments, deductibles, medications, etc.

To apply you must:

  • Have a SATB2-associated syndrome (aka Glass syndrome, 2q33.1) diagnosis
  • Have a financial need to pertains to the 5 funding categories on the application
  • Complete, in full, the application form

All information gathered in this application will be confidential and shared only with our Board of Directors to make eligibility determination awards.  Applications will be reviewed and evaluated on a weekly basis.

Global Genes in an international nonprofit organization that connects, empowers and inspires the rare disease community, with the ultimate goal of improving the lives of the more than 400 million rare disease patients around the world and their families.

Apply Now

COVID-19 RESOURCES ROUND-UP

During this difficult time that the world is enduring, change in routines, children staying home, and more, we wanted to help put together a list of resources to help you get through the coming weeks. We will continue to update this page as we learn of additional resources. If you know of any resources to add, please email them to us at info@satb2gene.org.

Stay Strong, Stay Kind, Stay SAS Strong, and most importantly, stay in touch. We’re all in this together. Let’s chat – through email, facebook, text, or video chat!

Helpful Resources to Get Us Through the COVID-19 Pandemic

To stay updated on the latest information about the Coronavirus outbreak, we recommend the following websites, as well as your state health department or national authority websites.

Check out this amazing list submitted by fellow SATB2 Homeschool mom for therapy, centers and sensory bins you can do at home! Download and print for wonderful ideas!

  • AAC Weekly Calendar: Strategy, video, book and activities for each day thanks to the Edmonton Catholic School District AAC team.

  • Social Story: Helping children understand social distancing thanks to Easterseals Chicago.

  • Social Story: Understanding COVID-19 school closures thanks to Easterseals Chicago.

  • Caregivers of AAC Users: Three things to do at home when school is cancelled, thanks to kimrankin.com.

  • Mrs. Speechie P: Following her on Facebook for daily ideas for speech activities you can do at home!

  • SLP Corner: Six ways to develop speech and language at home using a box.