Living with Epilepsy
Being diagnosed with epilepsy can feel overwhelming on many levels. The number of questions and concerns patients and their loved ones have can be numerous. Newly diagnosed patients with epilepsy may feel overwhelmed and isolated in the early stages of learning to adjust to all the changes. Patients who have carried the diagnosis of epilepsy for some time may need specific assistance in effectively managing a variety of issues that come up over time.
Financial burdens are an added complication for patients and their families. Fortunately, there are a growing number of foundations that have often been established by wonderful families that are meant to provide much needed help.
Scroll down to discover the many epilepsy foundations that exist at this time (this list will be updated regularly as more organizations appear).
Wellness Programs
Before the lockdown, NEREG prided itself in offering a wide variety of wellness initiatives for adult and child patients. At NEREG, our philosophy has long been that health is not only achieved through traditional medical treatment (of which we do offer state-of-the-art level therapies) but also through psychological and whole body wellness and as a community.
For this reason, our team of doctors and health staff have regularly participated in community educational programs, local and national walks, runs and rides, and also offered a variety of community activities for our patients and their families including, to name but a few, an excursion to a farm for peach picking, a knitting club, paint-your-pumpkin purple day, computer 101 lessons, an epilepsy book club, physical exercises lessons, learn to paint, epilepsy and psychogenic non-epileptic seizures support groups, and so much more.
We are hopeful that life is returning to normal and because of this, the Northeast Regional Epilepsy Group ( NEREG) and Mid-Atlantic Epilepsy and Sleep Center (MAESC) have decided to relaunch its wellness program starting with:
Introductory Chess lessons for persons with epilepsy and seizures and Book club for persons living with epilepsy and seizures and those who love them.
Epilepsy Book Club (Virtual)
Foundations and Funds
Assistance with the cost of seizure detection devices, seizure response dogs, transportation
1) The Danny Did Foundation was founded by the parents of Danny, Mike and Mariann Stanton, after Danny (who was just 4 years old) died in January 2010 due to Sudden Unexpected Death in Epilepsy (SUDEP). The mission of the Danny Did Foundation is to prevent deaths caused by seizures by increasing public awareness of SUDEP, enhancing communication between health professionals and families afflicted by seizures regarding SUDEP and supporting seizure detection and prediction devices that may assist in preventing seizure-related deaths.
The Danny Did Foundation offers grants for seizure detection and seizure prediction devices for to those in need. Presently, the Danny Did Foundation reports that it has provided grants to individuals in all 50 states and in 14 other countries.
To read much more about this foundation: https://www.dannydid.org/
For an application: https://www.dannydid.org/assets/1/6/DDF_Grant_App_2021_fill.pdf
And to lend your support to this fantastic foundation: https://www.dannydid.org/gift-shop/
2) The Chelsea Hutchison Foundation was created in honor of Chelsea Hutchinson who began having seizures at the age of 11 and who one night on April 19, 2009, at the age of 16, died quite unexpectedly after having a seizure in her sleep. The foundation was set up to serve individuals, families and communities affected by epilepsy by raising Awareness about SUDEP (Sudden Unexpected Death in Epilepsy), by providing support and equipment for prevention of SUDEP, and by creating a safe space and raising awareness within the greater community.
The Chelsea Hutchison Foundation provides grants for seizure response dogs for individuals living with epilepsy. This is done in the hopes that these trained animals can help to prevent SUDEP. The dogs can: alert others and summon help in the event of a seizure, secure a safe space for the individual suffering a seizure, rouse an unconscious individual, and carry vital information and medicine. The foundation lists approved service dog training organizations and lists several medical devices that can serve as seizure alerting tools.
https://chelseahutchisonfoundation.org/
To support this organization: https://chelseahutchisonfoundation.org/donate/
3) The Josh Provides Foundation was established in honor of Joshua David Chapnick who lived with epilepsy since he was 16 years of age and lost his life just before turning 29. His family set up the Josh Provides Epilepsy Assistance Foundation, Inc. to support those living with seizure disorders by offering community education & awareness, local support groups and financially helping them with medical services, seizure detection devices and transportation costs. Click on this link to discover the many ways in which this foundation helps those living with epilepsy.
To find help: https://joshprovides.org/get-help/
To support this foundation: https://joshprovides.org/make-a-difference/ where you can choose to either donate or become an ambassador.
4) The Halyn Murtha Family Assistance Fund helps Connecticut residents living with epilepsy in need of financial assistance to cover the cost of epilepsy treatment and care services associated with the condition, including medical expenses not covered by insurance, respite care, and medical devices such as watches and other alert devices. Contact 860-346-1924 for more information and to see if you qualify.
5) J. Kiffin Penry Patient Travel Assistance Fund: Program offers travel expenses assistance for medical care and/or treatment to individuals with epilepsy/seizure disorders. Contact program for additional information 800-470-1655.
6) LGS Foundation-Patient Assistance Program: This program offers financial assistance to individuals with LGS to help pay for medical expenses not typically covered through insurance or other programs. The program will award medical goods/devices, seizure response dog fundraising, reimbursement for genetic testing and medical travel expenses. Visit website for more details: www.lgsfoundation.org
Assistance with medication costs
1) NeedyMeds.Org
NeedyMeds.org is a private nonprofit web site that provides information about government programs, low-cost or free medical and dental clinics, and prescription assistance programs. They also list programs that may help people who cannot afford medicines and healthcare costs. You can also find some disease-specific financial aid programs.
NeedyMeds.org lets you search for patient assistance programs by drug name. For each drug on the list, NeedyMeds.org gives the program name, phone number, application link, eligibility guidelines, application requirements, and program details.
https://www.needymeds.org/
2) Medicine Assistance Tool
This web-based tool is provided by members of the Pharmaceutical Research and Manufacturerers of America (PhRMA). This search engine helps patients search up patient assistance programs.
https://medicineassistancetool.org/
3) PatientAssistance.Com
This is a free resource designed for patients who are struggling to afford their prescription medications. This resource helps connect these patients with patient assistance programs.
http://www.patientassistance.com/
4) RxAssist
This is a resource center that provides the following information: patient assistance programs, Medicare Part D programs for low-cost medicines, etc.
https://www.rxassist.org/
Contact email: info@rxassist.org.
Scholarships
UCB Family
Epilepsy Scholarship ProgramTM
The program offers educational scholarships to people living with epilepsy, family members, and caregivers to help them fulfill their dreams. Since 2005, UCB has awarded over $2.8 million in scholarships to more than 550 recipients who have applied their awards to undergraduate and graduate studies.
https://www.ucbepilepsyscholarship.com/
Epilepsy Alliance America Scholarships
The Epilepsy Alliance America has local chapters in Ohio, New Jersey, and parts of New York State and Pennsylvania that offer scholarships to individuals living with epilepsy.
https://www.epilepsyallianceamerica.org/scholarships/
Epilepsy Alliance of America is also the only foundation in the USA to offer educational scholarships for individuals living with psychogenic non-epileptic seizures (also known as, dissociative seizures).
Epilepsy Services of New Jersey Epilepsy Scholarship
For graduating high school seniors with epilepsy who are pursuing their educational goals and who have financial need. Scholarship recipients are selected through a competitive process.
https://www.familyresourcenetwork.org/education-training/
Dr. Lorna Myers PNES Scholarship Fund
https://www.epilepsyallianceamerica.org/scholarships/lorna-myers-pnes-scholarship-fund/