The COVID-19 pandemic and changing economy has increased financial anxiety and needs for many members of our community. It has also exposed deep inequities in health care and education across the country, especially for children and adults challenged by rare disease.
- Doctors across the country have shifted to telehealth visits during the pandemic, but these appointments require a strong WiFi signal. Families who cannot afford WiFi can have issues accessing remote care.
- Obstacles such as lack of a driver’s license or access to reliable transportation can make it difficult to get to appointments on time.
- Telehealth and remote learning require not only a strong broadband connection, but also devices such as a smartphone, tablet, or computer.
- A majority of children – as much as 80% – who require special education did not receive the support they need during distance learning.
Thanks to a very generous grant from Global Genes, our Community of Care grant provides up to $500 in financial assistance for 40 qualifying U.S. families in our pediatric epilepsy surgery community. These funds can be used to assist with continuity of education, medical care, and basic needs.
These include:
- Access to distance learning support, such as tutoring, online education programs, education apps, tablets (iPad), computers, printers, and internet access/WiFi;
- Telemedicine resources (including internet access/WiFi, smart phone, tablet, translator fees);
- Career counseling resources (such as in person or remote career counselor, internet access/WiFi, smart phone, tablet);
- Basic living expenses;
- Transportation costs to medical appointments (such as airfare and related travel costs for epilepsy or orthopedic surgery)
Applicant requirements:
- You are
- the parent/legal guardian of a child who is in the process of an epilepsy surgery evaluation or has had epilepsy surgery; or
- an adult who had epilepsy surgery in childhood;
- You are having difficulty meeting basic needs, educational continuity, or medical care due to financial need caused by the pandemic
- You need funds for basic needs, educational continuity, or medical care as listed above.
Deadline to apply is August 15, 2020.
or complete the application below and mail it in
Don’t have email or internet access? Leave us a message at +1.833.675.3335 with your full name and phone number, and we will call you back and manually complete an application for you.
about the author
Audrey Vernick is our Director of Patient and Family Advocacy. She is the parent of a child who had hemispherectomy for seizures caused by stroke. She holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She also serves on the International League Against Epilepsy’s Social Work and Social Services Section.
