Posted on Thu, Dec. 20, 2012

Single mother of three struck by seizures

By Michael Vasquez
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MARICE COHN BAND / MIAMI HERALD STAFF

Tonya Youngblood, center, and two of her three children, Monica, 13, left, holding her kitty, Tony, and Mariah, 12, right, in their apartment, in Fort Lauderdale. Youngblood is struggling with epilepsy, which has left her unable to work. She is asking readers for clothes, shoes, and bicycles.

It was a few years ago that Tonya Youngblood’s series of personal trials began. Youngblood’s mother suffered a stroke, followed by another and then a third.

That third stroke proved deadly, and then Youngblood’s own health took a surprising — and completely disruptive — turn. She was struck by epilepsy.

These days, the 37-year-old single mother of three is unable to work or even drive a car. Little by little, the condition stole Youngblood’s ability to be independent and self-sufficient — the simple task of grocery shopping requires the supervision of a family member or friend.

Still, Youngblood is thankful, as the family just narrowly avoided homelessness earlier in the year. From Wish Book readers, Youngblood is requesting clothes, shoes and bicycles for her three children, ages 12,13 and 18.

“I barely have enough income to take care of the bills,” said Youngblood, who receives federal disability assistance and lives with her children in a modest Fort Lauderdale apartment.

It was while working as a highway maintenance employee with the Florida Department of Transportation — a job she held for five years — that the first epilepsy seizure struck Youngblood several years ago.

Co-workers “said I was acting weird, I was talking funny,” Youngblood recalled. An ambulance whisked Youngblood to Fort Lauderdale’s Holy Cross Hospital.

As a hospital intake worker jotted down Youngblood’s personal information, it became clear something was seriously wrong. The worker asked Youngblood for her Social Security number, and for the first time in her adult life, Youngblood couldn’t remember it.

From there, an epilepsy diagnosis soon followed, though Youngblood said she was slow to accept it. She began taking the prescribed medications, but then stopped. She searched for second and third opinions, only to be given the same frustrating answer.

“I guess I didn’t want to believe it,” Youngblood said.

Attempts to hold onto her previous life proved futile. The Department of Transportation kept Youngblood on as an employee for a while, but ultimately dismissed her after the seizures kept recurring. Youngblood’s episodes were so intense that she would sometimes bite or hit those around her.

A subsequent job as a hair stylist was short-lived, as Youngblood said the seizures continued to happen at work and she would become “combative” when onlookers tried to nudge her into a chair until the seizure subsided.

Initially, doctors told Youngblood she could keep driving, but two seizure-related car accidents — including one where Youngblood’s black Nissan Pathfinder plowed through a concrete wall — led her to abandon getting behind the wheel. In both accidents, Youngblood’s middle-school aged daughters were also in the car, though thankfully no one sustained serious injuries in either crash.

With no car and no income, Youngblood soon fell behind on rent, and the family was evicted from their apartment. The family lived with Youngblood’s sister for some months, but eventually that sister’s boyfriend grew tired of the arrangement. Youngblood and her children had to go.

This past summer, the family bounced around, staying in various motel rooms, scraping by one day at a time. Youngblood relied on the generosity of others to keep afloat — a parent at her daughter’s school, for example, pitched in and paid for three nights at a motel.

“She had to end up pawning some of her jewelry...just to keep her and her children off the streets,” said Rachel Bilton, a case manager with the Epilepsy Foundation of Florida, which nominated Youngblood for this year’s Wish Book.

Now that Youngblood is receiving disability assistance — and is taking a new medication — her situation has stabilized somewhat. Seizures are less frequent, and Youngblood’s children, thanking to training offered by the foundation, are now well-versed in how to respond when a seizure does occur.

“Not put stuff by her mouth, don’t touch her,” said daughter Monica, 13. “Take sharp objects out of her hands.”

Though the family’s finances are tight, Youngblood is appreciative of having a roof over everyone’s head and hopeful about the future.

“It’s better now,” Youngblood said. “I just want to be able to keep it and maintain it.”


Read more here: http://www.miamiherald.com/2012/12/20/v-print/3151363/single-mother-of-three-struck.html#storylink=cpy

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Get Moving With Gabby

By Stacey Bomser

“Get Moving with Gabby” was the theme of the Silverstein family’s annual fundraiser to benefit the Epilepsy Foundation of Florida. They started the tradition three years ago after their daughter, Gabby, was diagnosed with epilepsy.

Epilepsy is not a disease, but rather a medical condition that produces seizures affecting a variety of mental and physical functions. One in three Americans is living with epilepsy. There is no cure, but Gabby and her family are hoping to change that. Each November, in honor of Epilepsy Awareness Month, they host a fundraiser. This year’s event raised over $1500. The fun-filled day featured Kidokinetics entertaining kids with organized sports, music by DJ Jason Bank of Jammin Express, a bounce house, face painting and much more. Gabby, a second grader at Gator Run Elementary School, says she felt special seeing so many people supporting her and this cause. “I think it’s important because the money raised will help find a cure for epilepsy, so maybe I won’t have it anymore and I won’t have to take medicine everyday.” The fundraiser is truly a family affair. Gabby’s brother, Wesley, collected raffle prizes. This was his mitzvah project for his upcoming Bar Mitzvah.

The event is not the only way Gabby is raising awareness about epilepsy. For the second year, she was a guest on Radio Disney. She also sells purple bracelets printed with the message: “Gabby Gives 4 Epilepsy.” The bracelets sell for $2 each. Gabby donates the money to Joe DiMaggio Children’s Hospital where she was a patient. You can help Gabby in her efforts to find a cure for epilepsy by purchasing a bracelet or making a donation through her Gabby Gives 4 Epilepsy facebook page.

Gentle Dental

FOR IMMEDIATE RELEASE: 

BOCA RATON, FLORIDA - Oct 31, 2012
As a proud sponsor of the Epilepsy Foundation of Florida, Gentle Dental encourages everyone to learn more about this condition that affects so many South Floridians and to get involved. Together we can make a difference.

The Epilepsy Foundation of Florida has two local events planned in celebration of national November Epilepsy Awareness Month. The first is a family friendly party at the Palm Beach Zoo (1301 Summit Blvd., West Palm Beach) on Friday, November 2, from 6:00 - 8:00 pm. There will be food, drinks, live music, animal encounters, activities for the kids, raffles and more. The second in the annual "Let's Talk About It" friends and family Thanksgiving style dinner with turkey and all the fixings on Friday, November 9, from 6:00 - 10:00 pm at the Sunrise Civic Center (10610 W Oakland Park Blvd., Sunrise). This will be an exciting evening of education, food, dancing and fun. Further information on these and other events can be found on the Foundation website: www.EpilepsyFLA.org. or call 877-553-7453.

 

About Epilepsy Foundation of Florida

Established in 1971 as a not-for-profit 501(c)(3), and celebrating its 40th Anniversary this year, EFOF serves as the lead advocate for the rights and needs of people with epilepsy and seizure disorders at the local, county and state level. EFOF provides valuable services, regardless of financial situation, to individuals and their families including advocacy, case management, information, referral, support, medical services, neuropsychological services, prevention and education, individual and family counseling, research, resource materials, support groups, and children's camp.

 

About Gentle Dental

Founded in 1997 and having treated over 430,000 patients, Gentle Dental is the leading provider of dental health services in South Florida. Gentle Dental has 21 convenient locations throughout South Florida and the Treasure Coast, providing Cosmetic Dentistry services, Preventative Dental Treatments, General and Reconstructive Dentistry and Specialty Dentistry. With the motto, "All Dentistry...One Place", the Gentle Dental team is equipped to serve all of your dental needs or wants - under one roof - whether you're looking for general or cosmetic dentistry specialists such as orthodontists, oral surgeons, endodontists, pediatric, periodontists or prosthodontists.

Call Gentle Dental toll-free at 1-877-343-3253 or visit Gentle Dental online at http://www.GentleDentalGroup.com, and follow us on Facebook (http://www.facebook.com/GentleDentalFL) and Twitter (http://www.twitter.com/MyGentleDental).

PRESS RELEASE: October 4, 2012

 

ETP and EF Announce Merger to Create
New National Organization

New Epilepsy Foundation to Drive Education, Awareness, Supportive Care and New Therapies for Millions of People Living with Seizures

Washington, D.C., OCTOBER 4, 2012 -- The Epilepsy Foundation and the Epilepsy Therapy Project today announced an intention to merge. The new organization will have unparalleled reach and leadership through a nationwide supportive care network, broad-based public awareness, education and focus on accelerating the clinical development of innovative therapies for people with epilepsy. The Epilepsy Therapy Project will continue to work to accelerate new therapies in a timeframe that matters as the Epilepsy Therapy Project of the new Epilepsy Foundation.

“The reality we face today is that one-third of more than two million Americans living with epilepsy have no seizure control. A staggering one in 26 Americans will develop a form of epilepsy in their lifetime, and still epilepsy remains one of the most under-supported medical conditions in the nation. The coming together of the Epilepsy Foundation and the Epilepsy Therapy Project will create an organization with critical mass, energy and credibility,” said Warren Lammert, co-founder of the Epilepsy Therapy Project and the father of a child with epilepsy. “Rather than building two competing brands and infrastructures, we will invest together to advance new therapies in a timeframe that matters and improve the lives of people with epilepsy.”

The Epilepsy Therapy Project and Epilepsy Foundation together have provided funding to 42 of the 85 known drugs and devices in active development through an existing and successful partnership, resulting in the introduction of three new epilepsy products in the past year: the Visualase MR guided laser for minimally invasive epilepsy surgery, the SmartWatch seizure detection and caregiver alert device, and the NeuroSigma Monarch external Trigeminal Nerve Stimulation system for the adjunctive treatment of epilepsy.

“The Epilepsy Therapy Project has done an impressive job of uniting the clinical and research communities, advancing the epilepsy pipeline, and creating epilepsy.com - the foremost website for professionals and consumers,” said Brien Smith, M.D., Chairman, Epilepsy Foundation. “As one foundation, we have the opportunity to build an exceptional and highly focused organization - with the capability and expertise to make enormous strides in education, funding and the acceleration of new therapies.”

“As a physician who treats many people with epilepsy, I am reminded daily of the desperate need for new and better therapies and scientific breakthroughs for those with no treatment options. When we created the Epilepsy Therapy Project, we faced the same need 10 years ago as today – to raise the level of funding in the nation and accelerate the development and commercialization of new therapeutics and diagnostics,” said Orrin Devinsky, M.D., co-founder of the Epilepsy Therapy Project, Professor of Neurology, Neurosurgery and Psychiatry and Director of the NYU Comprehensive Epilepsy Center, New York University. “We need strength, synergy and unity to drive our mission moving forward. Once merged, the Epilepsy Therapy Project and the Epilepsy Foundation will focus scientific research and clinical medicine on the most important goal – new therapies, better control and a national call to action on behalf of everyone living with epilepsy.”

The merging of the Epilepsy Foundation with the Epilepsy Therapy Project will create a unified organization driving education, awareness, support and new therapies for people and families living with epilepsy, bringing together the mission and assets of both organizations:

  • epilepsy.com, the leading portal for people, caregivers and professionals dealing with epilepsy;

  • 48 affiliated Epilepsy Foundations around the country dedicated to providing free programs and services to people living with epilepsy and their loved ones;

  • Scientific, Professional and Business Advisory Boards comprised of leading epilepsy physicians, health care professionals and researchers, industry professionals and investors with experience in clinical care, as well as in the evaluation and commercialization of new therapies;

  • A track record of identifying and supporting important new science, translational research programs, and the most promising new therapies;

  • The Epilepsy Pipeline Conference, a leading global forum organized in partnership with the Epilepsy Study Consortium that showcases the most exciting new drugs, devices and therapies, and includes the Epilepsy Shark Tank; and

  • A professional advocacy network focused on increasing epilepsy government and military funding and initiatives at the federal, state and local levels.

“When your child is first diagnosed with epilepsy, the fear, isolation and questions can be paralyzing,” said Philip M. Gattone, President and CEO of the Epilepsy Foundation and the father of a child with epilepsy. “The new Epilepsy Foundation will be even stronger and more nimble in providing national leadership and support to the epilepsy community. By bringing together the resources of the Epilepsy Foundation with the Epilepsy Therapy Project and epilepsy.com, we will be able to reach all people with epilepsy - from the newly diagnosed to soldiers returning from war - and help them understand the condition, seek out the best treatment options and educate on scientific inroads and clinical trials. No one needs to feel alone in the fight against epilepsy.”

The Boards of both organizations have agreed to a Memorandum of Understanding which, when executed, will result in the creation of a newly merged organization known as the Epilepsy Foundation. The plan will be for the organizations to be fully united by January 1, 2013.

About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy. Epilepsy affects more than two million people in the United States and 65 million people worldwide. This year, another 200,000 people in the U.S. will be diagnosed with epilepsy. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience seizures.

About the Epilepsy Foundation 
The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s mission is to stop seizures, find cures and overcome the challenges created by epilepsy. For additional information, please visit www.epilepsyfoundation.org.

About the Epilepsy Therapy Project 
The Epilepsy Therapy Project is a 501(c) (3) non-profit organization whose mission is to accelerate ideas into therapies for people living with epilepsy and seizures. Founded in 2002 by a group of parents, distinguished physicians, and researchers, the Epilepsy Therapy Project supports the commercialization of new therapies through direct grants and investments in promising academic and commercial projects. For more information about epilepsy, epilepsy treatment and the epilepsy pipeline, please visit our website,www.epilepsy.com.

For Epilepsy Therapy Project
Kim Macher, Executive Director
540-687-8077, ext. 100
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For Epilepsy Foundation
Ken Lowenberg, Senior Director,
Communications
301-918-3773
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For Media Inquires
Karen L. Bergman
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650-575-1509

 

By Jane Fetterly (originally published on PalmBeachDailyNews)

“My son Jackson, 7, is excited to one of the faces for the Epilepsy Foundation of Florida,” said Christine Cunningham, lead telecommunications supervisor for the town.

Jackson was diagnosed with the disorder in 2010. Cunningham said she would like to raise awareness about epilepsy and seizure disorders. Each year, it is estimated 45,000 children are diagnosed with epilepsy.

“Not everyone with epilepsy falls to the ground during a seizure,” she added.

Jackson, wearing a purple shirt, is pictured in a poster advertising a day at the Palm Beach Zoo to kick off November as Epilepsy Awareness Month.

The zoo event, from 6-8 p.m. Nov. 2, will feature music, finger foods, animal encounters, prizes, a silent auction and more. Tickets are $50 per adult (includes one child free) and $10 for each additional child. Tickets can be purchased at www.EpilepsyFla.org. The event will raise money to support programs for children and youth.