November 2017 is National Epilepsy Awareness Month

Chicago, IL – Nov. 1, 2017 - Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation are joining forces with a power player in the Broadway community this November to raise critically-needed funding for epilepsy research. Officially launching November 1 for National Epilepsy Awareness Month, the “My Shot at Epilepsy Challenge” is an awareness and fundraising campaign inspired by the song “My Shot” from the hit musical HAMILTON. Created by Miguel Cervantes—star of the Chicago production—and his wife Kelly, a CURE board member, the My Shot at Epilepsy Challenge proceeds will directly fund epilepsy research. 

 

Miguel and Kelly are driven to fight for a cure because of a deeply moving personal connection to the cause. Their daughter Adelaide suffers from a severe and incurable form of epilepsy known as infantile spasms, the cause of which remains unknown. 

 

“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” says performer and activist Miguel Cervantes. “That’s why I’m inviting everyone to join me this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.” 

 

Through the My Shot at Epilepsy Challenge, Miguel is urging the public to follow three steps: 

1. Take Your Shot - Take a still photo or video striking the “My Shot pose” (arm raised in the air, with index finger pointing up)
2. Donate - Make a donation at MyShotAtEpilepsy.org 
3. Share - Post “shots” on social media, using the hashtag #MyShotAtEpilepsy, tag friends and challenge them to participate and donate within 24 hours

“Millions of Americans are living with epilepsy,” says Susan Axelrod, Founding Chair of CURE. “This places an immense burden on these individuals, their families and society as a whole. The need to advance research efforts in this field is urgent and long overdue. We are so grateful to the Cervantes family for sharing their family’s story to help all who struggle.”

 

Epilepsy is a disease with a wide spectrum of severity. Three and a half million Americans, 470,000 of them children, have epilepsy. For some, it has minimal impact on daily life, but for more than a million patients, many with seizures that cannot be controlled with existing treatments, epilepsy can have significant lifelong impact on the ability to live independently and even on life expectancy. Epilepsy impacts 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined. Yet NIH funding is 60% less than funding for these other neurological diseases combined. 

 

“This is an exciting time where advances in scientific research appear more promising. The My Shot Challenge is a great opportunity to raise awareness and promote understanding,” says Kate Carr, CEO of CURE. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will help bring attention and funds to this cause and help advance the search for answers that can transform and save lives.” 

 

“Seizures in approximately one-third of individuals with epilepsy continue to be uncontrolled today – with no significant difference in patient outcomes in over 50 years,” says Philip Gattone, President and CEO of the Epilepsy Foundation.  “That means, every year, millions of individuals and families suffer devastating impact, including the immeasurable pain of thousands of lives lost. Through the ‘My Shot at Epilepsy Challenge’, Miguel and Kelly Cervantes courageously offer new hope and inspiration that by coming together, we will discover new therapies and research that will end epilepsy once and for all.”

 

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About CURE

 

Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. It was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. CURE is dedicated to the goal of “No seizures. No side effects. End epilepsy.” CURE works relentlessly to find a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. CURE has the distinction of being a 4-star charity on Charity Navigator, the highest award, recognizing sound fiscal management and commitment to accountability and transparency. For more information on CURE, please visit www.CUREepilepsy.org.

 

About the Epilepsy Foundation

 

The Epilepsy Foundation, a national non-profit with over 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP. 

source: Epilepsy Foundation press release

Joining The "My Shot At Epilepsy" Challenge is 'Hamilton' Star Miguel Cervantes

Hamilton Star  Miguel Cervantes in the “My Shot” pose for raise awareness for epilepsy. [

Miguel Cervantes is an actor, singer, and performer known for his work on both the stage and screen. A year and a half ago, he had an audition for the role of a lifetime—playing Alexander Hamilton in the Chicago production of HAMILTON, the hottest musical of our time. Yet during the audition process, in front of the producers and creator Lin-Manuel Miranda, Miguel received news that would totally upend his world. His daughter Adelaide had been diagnosed with epilepsy, shortly to be confirmed as a severe, incurable form known as Infantile Spasms (IS). For Miguel and Kelly, that fateful day was life-changing. Miguel won the role of his dreams, but he and Kelly began a heart-rending journey that no parent ever should face. As they were moving to Chicago and Miguel was preparing to portray Alexander Hamilton, the Cervantes family was also learning about epilepsy, a medical condition that is still underestimated, underfunded, and—for far too many Americans—entirely misunderstood.

During this journey, Miguel and Kelly have devoted themselves to raising funds and awareness for epilepsy research. One day soon, breakthroughs in epilepsy research may be able to help the over 1 million Americans who—like Adelaide—are unresponsive to current treatments. But this will only be possible with your support. Please join us to make a difference, to assist the millions of families like the Cervantes, and to help fund a cure. 

CURE is joining forces with the Epilepsy Foundation for the #MyShotAtEpilepsy Challenge to promote awareness and raise funds for epilepsy research that will lead to a cure. All proceeds from the campaign will be split between both organizations and used to advance breakthroughs in epilepsy treatments and research. The initial proceeds will be used to support the genetic testing of hundreds of individuals from the Rare Epilepsy Network and their subsequent enrollment into the Epilepsy Genetics Initiative for recurrent analysis. These are individuals who suffer from severe epilepsies with an unknown genetic cause. 


For more information on 'My Shot at Epilepsy" campaign, and how you can help, visit: http://myshotatepilepsy.org/

YouTube published by CURE - Citizens United for Research In Epilepsy             

November is National Epilepsy Awareness Month, visit the Epilepsy Foundation for more information:  https://www.epilepsy.com/

Melanie Griffith Has Revealed She Was Diagnosed With Epilepsy

2016 photo

Melanie Griffith has opened up about being diagnosed with epilepsy - and how stress from marriage and family life contributed to suffering from grand mal seizures. According to The Hollywood Reporter, Griffith revealed her diagnosis on a Women's Brain Health Initiative panel Wednesday night, where she sat alongside brain experts and Hollywood insiders like Sharon Stone.

Good Housekeeping — Megan Friedman article | Oct. 20, 2017                                           

She said she started having grand mal seizures, and they were always associated with stress. But she wasn't diagnosed with epilepsy until she received treatment in France. "[Doctors] said it was an anomaly - they didn't know what it was," she said. "The last two that I had I was on a boat outside of Cannes - on a big yacht - and I was extremely stressed out. Every seizure that I had was at a point when I was extremely stressed."

She said she was taken off the boat to a hospital in Cannes after each seizure, but after the second one, doctors there performed tests. She was diagnosed with epilepsy once she came back to the United States. Now, she says she is taking the drug Lamictal and claims she hasn't had a seizure in four years. She's also got a clean bill of health from a medical testing facility. She says doctors now say her brain was purely reacting from stress.

"I'm not stressed anymore," Griffith said. "As women, we take on family, we get the husband, we have the life, we have the children, we take care of the house, we also go to work, we can't sleep at night because we are up with the kids. I don't think I've slept for 35 years."

The Hollywood Reporter noted that though she didn't mention Antonio Banderas specifically, she did joke, "I got divorced, which is the real healer for me." She and Banderas divorced in 2014.

Feds Reach Consent Decree With Washington Metro Transit to Resolve Disability Discrimination Complaint

Department of Justice

Office of Public Affairs

Justice Department Reaches Agreement With Washington Metropolitan Area Transit Authority to Resolve Disability Discrimination Complaint

March, 01, 2017 - The Justice Department filed a proposed consent decree today to resolve a complaint that the Washington Metropolitan Area Transit Authority (WMATA) discriminated against a job applicant on the basis of his disability, in violation of the Americans with Disabilities Act (ADA).

The department’s complaint alleges that WMATA extended a job offer as an elevator/escalator parts supervisor to an applicant but withdrew the offer upon learning that the applicant had epilepsy. The complaint further alleges that WMATA failed to discuss with the applicant how his disability might affect his ability to do the job or whether there were any available accommodations that would allow him to do the job.

As part of the consent decree, which is subject to approval by the U.S. District Court for the District of Columbia, WMATA will institute new policies to ensure that employees and job applicants with disabilities have the opportunity to confer with WMATA about their limitations as well as opportunities for reasonable accommodation in the workplace. WMATA will also ensure that supervisors are fully trained in those policies. In addition, WMATA has agreed to pay $175,000 in compensatory damages to the applicant. This matter was based on a referral from the Equal Employment Opportunity Commission’s Washington Field Office, which completed the initial investigation of the facts.

“The ADA mandates that job applicants with disabilities receive fair and equal consideration in the hiring process,” said Acting Assistant Attorney General Tom Wheeler of the Justice Department’s Civil Rights Division. “This settlement provides for new hiring policies that will protect against discriminatory practices and safeguard the rights of all individuals with disabilities who seek employment with WMATA. We commend WMATA for agreeing to revise its policies and offering to compensate the job applicant.”

“The discriminatory conduct in this case deprived a qualified candidate of a job opportunity and caused him economic and emotional stress,” said U.S. Attorney Channing D. Phillips of the District of Columbia. “This case shows there will be consequences for employers who fail to comply with the Americans with Disabilities Act. We are pleased that WMATA recognizes the need for new policies and will compensate the job candidate.”

To read the consent decree, please visit http://www.ada.gov/wmata/wmata_cd.html. For more information on the Civil Rights Division, please visit www.justice.gov/crt. For more information on the Civil Rights Division’s Disability Rights Section, please call the department’s toll-free ADA Information Line at 800-514-0301 (TDD 800-514-0383) or visit www.ada.gov.

WMATA Consent Decree

SOURCE: Press Release

Woman with Epilepsy calls for better Priority Seating Signage on Canadian Public Transportation

A young woman who has seizures is asking the public transport system in British Columbia, TransLink, to update its priority seating signage to reflect the needs of people with invisible disabilities. 

Tavia Marlatt from Surrey, British Columbia, experiences major seizures, causing her to black out and fall to the ground. She uses the seats marked for people with disabilities to prevent getting injured.

"I get the nastiest looks from everybody because I'm 19 and just by looking at me, you can't tell that I have a disability," Ms Marlatt said.

"There's not enough room in the back to have a grand mal seizure without getting hurt."

Ms Marlatt relies on public transport to get around every day; drivers must not be seizure-free in Canada for at least a year to get behind the wheel, but she has a major seizure about every two weeks.

To accommodate the needs of people like her, Ms Marlatt is asking TransLink to put up signs with the international medical symbol — a mark she has tattooed on her arm — alongside the wheelchair symbol.



She says the current sign implies a person must have a physical disability to use the priority seating.

In a written response, TransLink said Ms Marlatt's request serves as a reminder to all passengers that many disabilities are invisible.

"We urge all our customers to be kind and considerate to their fellow passengers," said TransLink.

It also said it has increased the number of priority seating signs but did not, however, specifically address whether it would accept Ms Marlatt's request.

Ms Marlatt says her ultimate goal is to create a better understanding of invisible disabilities among transit users and the general public.

"I would just really hope that people put more of an effort into learning about non-physical disabilities," she said.

She said her last experience having a seizure on the bus came as a shock — she woke up lying on the floor with the door repeatedly closing on her head.

"Literally nobody tried to help me. They just stood there and watched," she said. "I was very upset with our society for not helping a youth having a medical issue."

She has sat in the priority seating area ever since then, despite the dirty looks. 

Juliet Ashton, Epilepsy Society's Sapphire nurse consultant for epilepsy commissioning said: 

“Epilepsy is an unpredictable condition, there can be very little warning, if any, when a seizure is going to happen. People with epilepsy are constantly having to risk assess for that ‘just in case’ situation, hence the need for priority seating to give them space and access for emergency assessment/treatment , in case they have a seizure. Until they do they can blend into the general population going about their travels.

"To Read Epilepsy Society's travel information: here

http://www.epilepsysociety.org.uk/News/Canadian-woman-with-epilepsy-calls-for-better-disability-signage-on-public-transport-25-02-2016#.VtDHiZwrKM9

Santa snoozes with Ohio boy who just had seizure due to epilepsy and spastic quadriplegia cerebral palsy

CANTON, Ohio-- A seizure wasn't going to prevent one Akron 2-year-old from meeting Santa.

Ryland Wade has epilepsy and spastic quadriplegia cerebral palsy. He's on a special diet to help control his seizures, but still has them multiple times a day.

Just before Samantha Wade took her son to Belden Village Mall on Sunday, he suffered a seizure.

"It really sapped his energy, but we didn't want that to stop him from meeting Santa," Wade wrote.

The event at the mall was for children with special needs, providing a quiet and relaxing environment for them to meet with St. Nick.

"When I set Ryland on his lap, he wouldn't open his eyes for anything," Wade said. "But Santa immediately cuddled with him, and very quietly talked to him for awhile. When it came time for a photo, he pretended like he was snoozing along with Ryland, making for one awesome picture, and a very memorable moment for us." “I was so grateful he did that,” she told Cleaveland's FOX 8's Suzanne Stratford. “Any Santa could’ve smiled but he was intuitive to Ryland's needs.”

Ryland does not respond to seizure medications and that's why his family is sending postcards to Ohio Gov. John Kasich. They are pushing for use of medical cannabis oil in the state of Ohio.

You can follow along with Ryland's journey on his Facebook page here

DECEMBER 9, 2015, BY TRIBUNE MEDIA WIRE