• Shoshanah
  • Kelsey
  • Stanley
  • Jacob
  • Leland
  • Ryan
  • Xander
  • Michael
  • Wotay
  • Jared
  • Sean
  • Edgar
  • Ray
  • Michael
  • Emily
  • David
  • Dixie
  • Steve
  • Maricella
  • Nadia
  • Jackson was born on June 4, 2014 with a port wine stain on the left side of his face. Only 1 in 5 thousand babies are born with the stain on their face and 1 in 30 thousand have the full syndrome. The full syndrome (Sturge-Weber) causes seizures, neurological damage and glaucoma. When Jackson was 2 months old he had a trabeculotomy surgery to try and release the pressure in his left eye. The surgery worked for 3 months before they had to go back in to place a Ahmed Shunt in his left eye due to his glaucoma and pressure increasing. Jackson is now wearing glasses and his eye seems to be doing much better. Jackson is also having laser treatments to lighten the port wine stain. At 3 months of age Jackson had an EEG and MRI and everything came back fine. Recently, we visited a neurologist in Baltimore at the Kennedy Krieger Institute who ordered Jackson's 2nd EEG. The EEG showed low brain activity on the left side which makes Jackson a candidate for seizures. The neurologist prescribed medication for Jackson if he were to have a seizure longer than 3 minutes. Jackson's next scan is an MRI, MRV and MRA to determine how much of the brain that has been affected and exactly what part.
    Due to Jackson's medical condition and the many doctor visits in and out of town, I had to quit work to stay home with him. With me being at home with Jackson everyday it is easy during the day for me to detect a seizure. The problem comes during the night when we have no way to know if he is having a seizure or not. The neurologist recommended an EMFIT monitor, but insurance did not cover it. Jackson's doctor and nurses in Baltimore suggested we contact JoshProvides to see if they could provide us with a monitor. After contacting Mr. Chapnick, within 2 weeks we had an approval for the monitor. The monitor was shipped out and we received it within 2 days. Mr. Chapnick and his team have been a wonderful group of people to work with. They have provided us with a great piece of mind in monitoring Jackson's sleeping at night. Thank you so much for everything you have done for our family to make our situation easier to deal with.
     
    Jackson Kyser Family
    Ashley, Jason and Jackson
  • I can't begin to thank the Josh Provides family enough for the peace of mind they have made possible for me. My son was born in July, 2013. After a healthy pregnancy and full term delivery, the doctors found tumors in his heart. He was transferred to the NICU where he had an MRI that revealed tubers in his brain and ultimately diagnosed him with Tuberous Sclerosis Complex. TSC is a genetic disease that causes benign tumors to grow on all the major organs. It is strongly associated with a particularly severe type of seizure, called Infantile Spasms. As we were told to expect, one week before Owen turned 6 months, he had his first Infantile Spasms. My heart broke. Today, we are at 1 year seizure free on his medications, a status I was too fearful to hope for. With that joy comes the knowledge that he will likely soon be weaned from the medication, and the absolute fear that he will develop new seizures. I have been looking for months for a seizure detection device that will work for my son. He has never had a tonic clonic, so many of the existing monitors will not help us. Because of the new technology, there is a new watch coming out that continually monitors biofeedback rhythms and sends alerts at changes. Josh Provides approved us for the purchase of two watches, allowing me to have immediate notice of any seizure activity. There are no words to describe the gratitude I feel for this generous gift.
    Owen Gorham Picture
    Nikki
  • We are writing to share what a positive and life changing experience we have had with JoshProvides. Our 12 year old, Mickey, who has multiple seizure types and global developmental delays, does not have seizures that are controlled by medications. Even after trying over 10 different types! He has also tried a modified Atkins diet for over a year with no success and failed to be a surgery candidate. As a family we have been woken up in the middle of the night to find him having a seizure that requires emergency medication to stop it. As you can imagine, the lack of sleep we experience is an added stress and makes for a poor quality of life when seizures tend to cluster over several days. The fear and anxiety we feel regarding his safety at night is unexplainable. We had searched for sometime to find a seizure detection device that might help us to be alert when he needs us. The Emfit was a great choice but was very expensive. After trying for a year to get our insurance to fund it, with no success, we heard about JoshProvides. Within one week we had an approval and the equipment was sent out right away. We are so thankful to finally have a safe and truly restful nights sleep!
    Michael Picture
    Kelli and Mickey
6Shortly after Josh passed away, Sandi, Nicole and Bruce Chapnick (the “Chapnick Family”) established the Joshua David Chapnick Memorial Fund (“JDCMF”) with the Community Foundation of Sarasota County (“CFSC”) in honor and memory of Josh who died from a fatal seizure. CFSC is a tax-exempt organization under IRC Section 501(c)(3) and a public charity under IRC Section 509(a)(1) or (2)…read more

Services We Provide

How We Use Our Funds

Except for the funds maintained in the Foundation’s general operating account to award financial assistance and overhead costs of operation, all donor funds are held and invested by Community Foundation of Sarasota County…read more

How To Apply For Assistance

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The charitable purpose of JoshProvides Epilepsy Assistance Foundation (“JoshProvides Foundation” or “Foundation”) is to educate, increase awareness, and provide financial assistance for people living with epilepsy and seizure disorders and their families…read more

Support Groups

JoshProvides Epilepsy Assistance Foundation (“Foundation” or “JoshProvides”) organized its first EPILEPSY SUPPORT GROUP for the greater Sarasota/Manatee County, Florida area for the benefit of those living with epilepsy and their families on January 15, 2013. Monthly meetings are held on the first Monday of each month from 6:30pm to 8:00pm, at 2033 Main Street, Suite 301, Center Pointe Building, Sarasota, FL 34237.

Faces of JoshProvides

You open your hand, and provide for all the living

Josh’s Epitaph and Basis for JoshProvides

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JoshProvides Epilepsy Assistance Foundation is a Florida not-for-profit corporation. The Internal Revenue Service (“IRS”) has determined that the Foundation is exempt from Federal income tax under Section 501(c)(3)…

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All Contributions Count

JoshProvides Epilepsy Assistance Foundation, Inc. (“JoshProvides Foundation”) is administered by its Board of Directors

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Circle of Providers

Many individuals and businesses have committed to the JoshProvides Epilepsy Assistance Foundation (“JoshProvides Foundation”) a contribution to help preserve the long term Mission of JoshProvides Foundation in…

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JoshProvides Circle of Influence

Many individuals and organizations are contributing to the JoshProvides cause, and we thank all of you for your support…

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Get Involved

JoshProvides Epilepsy Assistance Foundation, Inc. (“JoshProvides Foundation”) is a strong financial supporter for people with epilepsy…

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Sponsors

01 iCard
02 http://www.ntrs.com/
Altmed
Anne Weintraub
Clevland Clinic
http://doctorsofsarasota.com/
http://gofiveguys.com/menu/sarasota-university-park/
http://purmort.com/
http://us.cyberonics.com/en/vns-therapy/
http://www.cyberonics.com/?referer=us
http://www.emfit.com/
http://www.h20america.com/
http://www.halleyimages.com/
http://www.hawcpa.com/
http://www.portfoliostrategygroup.com/
http://www.smart-monitor.com/
http://www.smart-monitor.com/
http://www.wealthenjoyment.com/
John Cannon Homes
Sarasota Ford
Sarasota Memorial Hospital
The Giving Partner
The Soda Group

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