Angels Of Epilepsy Newsletter
#AOENEWS, Articles, Blogs, & More!
HAPPY NEW YEAR 2017!
Angels Of Epilepsy wishes you all a very Happy New Year in 2017! Believe in yourself powerfully, especially when there is no reason left because the ultimate bottom is the best place to start a big rise. This is a new year so believe in yourself, because no one ever achieved anything significant without believing in themselves.
Life has no remote, so let's wake up and change it. We can find a new hope every new day and every New Year!
We wish you much success and new grace for new accomplishments!
Happy New Year,
Angels Of Epilepsy
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Angels Of Epilepsy at the Epilepsy Advocate Summit in Houston, TX
Sunovion hosted an Epilepsy Advocate Summit in December surrounding the American Epilepsy Society Annual Meeting in Houston, TX. Meeting advocates, survivors, doctors, and researchers was absolutely amazing and such a great experience for Angels Of Epilepsy. The Summit was co-hosted by actor Greg Grunberg, who is also an epilepsy advocate/caregiver along with Jessica Keenan Smith, founder and Managing Editor of well-known blog, Living Well With Epilepsy.
Talking about how we should get more awareness, recognition, and support was one of the main discussions at this summit. I really do appreciate this invitation and it has given me much more assignments for Angels Of Epilepsy Foundation and the survivors around the world.
Much thanks Sunovion and everyone involved in this amazing event!
Visit http://www.sunovion.com/
~ Picture: Natalie Beavers with advocates, survivors, bloggers, and researchers in Houston, TX
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Congress passes 21st Century Cures Act, boosting research and easing drug approvals
Us here at Angels Of Epilepsy give much thanks to President Barack Obama and Congress for signing the Cure's Act into law. This bill is to get research, treatment, and finding a cure for those living with Alzheimer's, Epilepsy, and dramatic brain injury. Thanks President Obama!
Congress passed sweeping legislation that boosts funding for medical research, eases the development and approval of experimental treatments and reforms federal policy on mental health care.
The 94 to 5 Senate vote Wednesday followed a 392 to 26 House vote last week. The bill, known as the 21st Century Cures Act, now heads to the desk of President Obama, who praised the bill Wednesday and said he would sign it.
The bill provides for $4.8 billion in new funding for the National Institutes of Health; of that, $1.8 billion is reserved for the “cancer moonshot” launched by Vice President Biden to accelerate research in that field. Another $1.6 billion is earmarked for brain diseases including Alzheimer’s. Also included are $500 million in new funding for the Food and Drug Administration and $1 billion in grants to help states deal with opioid abuse.
-Article from: The Washington Post / www.washingtonpost.com
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Newsweek Writer Going After Twitter User for Allegedly Causing Seizure
Newsweek journalist Kurt Eichenwald may soon be pushing the boundaries of an assault claim and is now petitioning a Texas court for help.
Eichenwald, whose aggressive stories about Donald Trump's foreign business entanglements earned widespread attention during the presidential campaign, suffers from epilepsy. On Dec. 15, after a truly contentious interview with Fox News' Tucker Carlson, an anonymous Twitter user tweeted at him an image of a strobe flashing at rapid speed.
According to a court filing on Monday by Eichenwald, the user — under the handle, @jew_goldstein, "sent this image with the intent of causing a seizure, as evidenced by the words Doe typed onto the strobe, 'You deserve a seizure for your posts.' Doe succeeded in his effort to use Twitter as a means of committing assault, causing [Eichenwald] to have a seizure which led to personal injury."
Read more here: http://www.hollywoodreporter.com/thr-esq/newsweek-writer-goes-twitter-user-allegedly-causing-seizure-957631
- Article from: HollywoodReporter.com
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Meet Epilepsy Survivor & Advocate, Jocelyn Cruz
Hello. My name is Jocelyn Cruz. I am 20 years old and I was diagnosed with epilepsy (Absence peti-mal Seizure) at the age of 2. According to my mother, I almost died twice. However, I am blessed to say that God has been by my side through it all. Growing up as a child has been a huge obstacle however my memory has been cut short. Sometimes it is hard for me to remember things that happened recently or in the past, like childhood events. I would also doze off, and people would mistake it as if I was ignoring them and I would be confused as to why I would receive such a reaction.
Although, my seizures have been under control while undergoing treatment with Depakote, this does not mean that I am seizure free. However, I can say that my last seizure was in May of 2009 and I hope that it is my last. All my life, I never really understood why I would always go to the doctors office on a daily basis. .
I was not aware of my condition until the age of 7 or 10, but now that I know more about my condition and was able to accept it recently, and I realized that I don’t have it as bad as others. I also realized it is time to advocate for epilepsy. I believe that epilepsy is a disorder that tends to be ignored because epilepsy is an "invisible illness." Unlike breast cancer and lung cancer, etc. one can see the damages that has been done. Epilepsy, on the other hand, doesn't really have any visual damages except for bruises from falling into seizures.
A person with epilepsy can look completely fine on the outside, but in reality people with epilepsy struggle through the pain and sickness in the inside, which makes it difficult for others to understand. I also believe that not too many individuals are well educated or informed about epilepsy, therefore it is important to spread the word and advocate so that we can all fight together in hope of finding a cure for epilepsy.
#CureEpilepsy
Jocelyn Cruz
Epilepsy Survivor/Advocate
Instagram - @j.lynxx
Angels Of Epilepsy is so proud of you Jocelyn and we send our best wishes and success to you. Thanks for being an advocate and an inspiration to many!
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Ex-N.F.L. Player, Ben Utecht, Tells His Consequences of Concussions
MINNEAPOLIS — Getting readers to spend $25 on a book about athletes and concussions can be a hard sell. The topic isn’t uplifting, and the biggest audience for sports books — people who are fans — typically prefers to read about famous coaches and players.
Yet Ben Utecht, a tight end who retired from the N.F.L. in 2010 after absorbing too many hits to the head, still managed to draw a small group of people at a Barnes & Noble in Minneapolis recently, most of them eager to shake his hand and buy a copy of his book, “Counting the Days While My Mind Slips Away,” which is published by Howard Books, a division of Simon and Schuster.
With a soft voice and an aw-shucks grin, Utecht, the son of a Methodist minister, was so disarming and eager to please that it was difficult to imagine that he played a violent game like football. He posed for pictures, swapped stories about mutual friends — Utecht is from Minnesota and played his college ball there — and showed off the diamond-encrusted Super Bowl ring that he received while playing with the Indianapolis Colts.
- Article from: The N.Y. Times
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"Let Me Tell You About My Life" - Natalie Y. Beavers Documentary
All that I've gone through battling this invisible illness which is epilepsy, I've realized that it has made me stronger. Being diagnosed at the age of 5, it was a tough battle for me and my family. Being young and having to go to school, I've never had others to look at me in a different way. My friends and classmates were there for me, really! Dealing with different medications and the reactions of it was very hard for me. I literally hated my meds as a child because of the reactions. I still lived a good life. Having parents and sisters that cared for me, and others that understood me, was a blessing.
Reaching 40 years old is a blessing and I'm very proud! But now, in this world we live in, it's a little harder for people living with epilepsy, especially for children and teens. The bullying and the discrimination must stop! Epilepsy survivors are some of the strongest people in this world. I want this younger generation to not go through even more pain. I am standing up for them and I will continue to uplift their spirits and encourage them and their families.
#StopTheBulling
#EpilepsyLivesMatter
"I Am Natalie & This Is My Life" documentary is being filmed and I ask for prayer as I take upon this journey. My story must be heard....
Follow Angels Of Epilepsy on Pinterest and on other social media to follow Natalie and this journey.
- Natalie Y. Beavers
Survivor/Advocate
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Why I Started Speaking Up About My Epilepsy by Whitney Petit
Epilepsy stigmas are tough barriers to break through. There are people who might turn the other way when they witness someone having a seizure, people who might cringe at the sight of convulsing or losing control of bodily functions. But those people might not realize the person having a seizure is perhaps fighting for their life in the midst of it.
I believe there’s a serious lack of empathy in the world we live in, a lack of willingness to find the root of the situation or the concern to ask the why. But then you have us, the rare percentage who will stand up and say there’s more to this story.
What is a stigma exactly? Merriam-Webster defines a stigma as “a set of negative and often unfair beliefs that a society or group of people have about something.” I think that describes it perfectly. The stigmas placed on those living with epilepsy have been horrible over a number of decades. A public seizure has sometimes been enough to label someone an outcast, put into a box and stigmatized. This is why it took so long for me to share that I have been living with epilepsy my entire life.
Read more here: https://themighty.com/2016/12/talking-about-my-epilepsy-diagnosis-to-end-stigmas/
Follow: Changing Focus/Whitney Petit on Instagram, Facebook, Twitter, & visit www.cf-epilepsy.org
-Article from: www.thealmighty.com
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Epilepsy: why do seizures sometimes continue after surgery?
FULL STORY New research from the University of Liverpool, published in the journal Brain, has highlighted the potential reasons why many patients with severe epilepsy still continue to experience seizures even after surgery.
Epilepsy continues to be a serious health problem and is the most common serious neurological disorder. Medically intractable temporal lobe epilepsy (TLE) remains the most frequent neurosurgically treated epilepsy disorder.
Many people with this condition will undergo a temporal lobe resection which is a surgery performed on the brain to control seizures. In this procedure, brain tissue in the temporal lobe is resected, or cut away, to remove the seizure focus. Unfortunately, approximately one in every two patients with TLE will not be rendered completely seizure free after temporal lobe surgery, and the reasons underlying persistent postoperative seizures have not been resolved.
Read more: https://www.sciencedaily.com/releases/2016/11/161117104443.htm
- Article from: www.sciencedaily.com/
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Study Reveals Pregnant Women Taking Epilepsy Drug Increase Birth Defect Risks
Pregnant women who suffer from episodes of epilepsy usually take medication to manage their condition. But a new study has revealed that the continuous intake of epilepsy drugs can likely increase birth defect risks to the baby. Worse, most moms are not even aware that their medication is causing this.
The study, which has been conducted in the U.K. and published in the Cochrane Database of Systematic Reviews, cites that thousands of pregnant women take epilepsy drugs containing sodium valproate for seizure control. But at least 40 percent of babies exposed to sodium valproate as fetuses end up with developmental problems affecting their speech and motor skills.
The researchers looked into data of British mothers who have been taking epilepsy drug since 1973. They found out that among 48,000 babies, some 19,200 babies had developmental problems, Daily Mail reports. Among these include underdeveloped brains, speech delay, digestive and visual problems, as well as pronounced weak and undersized limbs that also opens up other physical issues.
Read more here: http://www.parentherald.com/articles/91880/20161205/birth-defects-epilepsy-drug-links-study-reveals-pregnant-women-taking.htm
- Article from: www.parentherald.com
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Sunovion taps Empatica for Phase 4 drug trial -- and two other digital health projects targeting epilepsy
Marlborough, Massachusetts-based pharma company Sunovion will use the Empatica Embrace, a wearable device for seizure detection, in a phase 4 clinical study of Aptiom, a drug meant to reduce seizures in people with epilepsy.
“We believe that incorporating digital health technologies into traditional treatment paradigms has the potential to inform and enhance best practices and further empower people living with serious medical conditions and their families,” Dr. Antony Loebel, executive vice president and chief medical officer at Sunovion, said in a statement. “We look forward to sharing the results of this study and continue to look for opportunities for Sunovion to leverage advances in digital health.”
Read more here: http://www.mobihealthnews.com/content/sunovion-taps-empatica-phase-4-drug-trial-and-two-other-digital-health-projects-targeting
-Article from: www.mobihealthnews.com
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Epilepsy and Families: 4 Smart Strategies to Parenting by Jewell Gibson
Parenting is a very demanding job!! Its full of uncertainty, requires a lot of attention, time, energy, patience and whole lot of trial and error … because lets’s face it, these little people can be a handful. When you have a seizure disorder and your a mom of two (2) boys there’s never a dull moment. It adds an extra level of anxiety and stress that you may not have otherwise experienced. Our oldest son Khristian is ten (10) years old and our youngest son Ayden just turned one (1) years old November 18th. Since there is such a significant difference in their ages, I am often being pulled in two different directions at once.
Currently, our oldest Khristian is gearing up for Junior High school next year. So there are the every day worries of attending open houses, making sure he attends tutoring, frequent trips to Barnes and Nobles so he explore different genres of books and expand his vocabulary, checking homework and filling out applications. He needs us to consistently stay on top of him and follow up with his homework because like most kids his age he gets lazy and tries to get out doing his work.
Read more here: http://liveoutloud4epilepsy.org/2016/11/20/epilepsy-and-families-4-smart-strategies-to-parenting/
- Article from: Jewell Gibson, Survivor/Advocate
Follow Live Out Loud 4 Epilepsy (lol4epilepsy) on Instagram, Facebook, Twitter, & visit www.liveoutloud4epilepsy.org
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AOEat's Healthy on Pinterest: Broccoli Cheese Chicken Bake Recipe {Easy Dinner Idea}
Ingredients:
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- Chicken Breast
- Campbell’s Oven Sauce: Cheesy Broccoli Chicken
- Frozen Broccoli Florettes
- Cheddar Cheese
- Recipe from: http://www.thepinningmama.com/broccoli-cheese-chicken-bake-recipe/
Follow Angels Of Epilepsy on Pinterest - (AOEat Healthy)
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Your Support Matters Because Epilepsy Lives Matter!
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Angels Of Epilepsy
Email: angelsofepilepsy@gmail.com
Website: http://www.aoepilepsy.org/
Facebook: https://www.facebook.com/aoepilepsy/
Twitter: @AOEpilepsy