Angels4Epilepsy - Two More Hernando Visits to Children with Epilepsy

Two more visits from Hernando wishing these adorable little one's laugh and smiles!

Angels4Epilepsy matches every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group. 

In March, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy. 

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.

EEG- fMRI: New Imaging Techniques Used to Help Patients Suffering from Epilepsy

Toronto, May 23 2013 - New techniques in imaging of brain activity developed by Jean Gotman, from McGill University's Montreal Neurological Institute, and his colleagues lead to improved treatment of patients suffering from epilepsy. The combination of electroencephalogram (EEG) and functional magnetic resonance imaging (fMRI) leads to more precise localization of the areas generating epileptic seizures, giving neurosurgeons a better understanding of the optimal ways of intervention, if appropriate. These results were presented at the 2013 Canadian Neuroscience Meeting, the annual meeting of the Canadian Association for Neuroscience - Association Canadienne des Neurosciences (CAN-ACN).

Epilepsy is a brain disorder in which a person has repeated seizures. These seizures are episodes of abnormal brain activity, in which the brain sends out abnormal signals. Seizures can often be controlled using medication. In an estimated 40% of patients, however, drugs do not control seizures well, and for some of these people surgery to remove the abnormal brain cells that cause the seizures can be considered.

Before brain surgery can be performed, doctors and surgeons must determine if the point of origin of the seizures, which can be viewed as brain activity spikes, is discrete, and if it can be removed without damaging other important brain areas. Dr. Gotman and his colleagues developed a new imaging technique, combining EEG, which delivers excellent information on the timing of the spikes but is not always capable of precisely locating the source of the discharge, with fMRI, which allows to very precisely localize this activation in the brain.

EEG- fMRI, while technically challenging, since the strong magnetic field required for fMRI can interfere with the recording of the minute electrical currents emitted by brain cells, is useful for patients in whom precise localization of the focal point, or point of origin of seizures, was not well defined. It is also important for a better understanding of how epileptic discharges affect brain function.

Citation from Dr. Gotman: "Combing EEG and fMRi is a unique method to define non-invasively in the whole brain the regions involved in epileptic discharges. It is a complex tool but it is likely to play an increasing role among the methods currently used to localize the source of epileptic activity"
This research is supported by the Canadian Institutes of Health Research.

http://www.eurekalert.org/pub_releases/2013-05/cafn-nit051613.php

Another Hernando to this Adorable Little One with Epilepsy! #epilepsy

Another Hernando to this adorable one with epilepsy!

Angels4Epilepsy matches every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group. 

In March, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy. 

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.

Angels4Epilepsy's Original Mascot Hernando Comforting Another Child with Epilepsy

Hernando found his way to this little cutie! 

Our sponsorship for bears gifted include Angels4Epilepsy matching every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group. 

In March, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy. 

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.

Phase 1 Data Reporting Top Line Results for INS001 - Drug Resistant Epilepsy

MIAMI, May 17, 2013 /PRNewswire/ -- Insero Health, Inc., a company developing natural compounds to address unmet medical needs in epilepsy and related neurological disorders, is today reporting top-line results from a Phase Ib trial of its lead compound INS001 in patients with drug-resistant epilepsy. The data are being presented at the AntiEplileptic Drug and Device Trials (AED) Xll meeting by Dr. Steven Schachter, Harvard Medical School epileptologist and Chairman of Insero's Scientific Advisory Board. In this study, INS001 appeared safe and well tolerated.

INS001 is a naturally occurring compound that has shown promising activity in multiple preclinical epilepsy models. Insero researchers believe that INS001 exerts its anti-epileptic effects through a unique combination of mechanisms: it is both a potent acetylcholinesterase inhibitor and an NMDA-receptor antagonist. The compound has previously demonstrated good safety and signs of therapeutic activity in a Phase II trial in Alzheimer's disease, as well as in preclinical models of multiple sclerosis and neuropathic pain.

The Phase I trial was a single-center, inpatient, open-label, rapid dose escalation study in patients with drug-resistant epilepsy. INS001 was safe and well tolerated at doses expected to be therapeutic, and increased cardiac parasympathetic tone and electrical stability were observed.

Dr. Schachter noted, "The positive safety demonstrated in this first trial of INS001 in drug-resistant epilepsy is a step forward in the clinical development of this therapy as a potential new treatment option for patients with epilepsy whose seizures are inadequately treated today."

Insero expects to initiate a Phase II proof of principle trial in patients with drug-resistant epilepsy by early next year.

Epilepsy affects about three million people in the U.S. and over 50 million people worldwide. Many people with epilepsy take multiple medications, yet the published literature suggests that as many as one-third are unable to control their seizures with current therapies. INS001 has a unique mechanism of action that suggests it could potentially provide superior efficacy either as a stand-alone therapy or when given in combination with other epilepsy drugs.

The Antiepileptic Drug and Device Trials (AED) XII Conference is sponsored by the Epilepsy Study Consortium in collaboration with the University of Pennsylvania Epilepsy Center and the Epilepsy Therapy Project, an initiative of the Epilepsy Foundation. For more information, visitwww.epilepsy.com/etp/aedtrialxii.

About Insero Health

Insero Health is a clinical-stage company that discovers and develops small molecule therapies derived from natural products to address significant unmet needs in neurological diseases. The company's initial target is epilepsy, a debilitating disorder that affects approximately 3 million people in the U.S. and over 50 million people worldwide. The company is based in Miami, Florida, at the University of Miami Life Science and Technology Park. For more information, visitwww.inserohealth.com.

UCB and IBM Collaborate to Personalize Care for Epilepsy Patients

Published: Thursday, 16 May 2013 | 9:47 AM ET

ARMONK, N.Y. and BRUSSELS, May 16, 2013 /PRNewswire/ -- regulated information -- UCB and IBM (NYSE:IBM) today announced the completion of the initial phase of a project designed to harness the power of analytics to help healthcare providers deliver more highly personalized care to people living with epilepsy. The milestone marks the critical first step in the path towards eventually harnessing the transformative power of cognitive computing capabilities, such as IBM Watson, for epilepsy care.

The goal of the project is to deliver an interactive system that translates massive amounts of patient data and scientific literature into insights that healthcare providers can consult at the point of care to inform their treatment decisions.

Together, UCB and IBM scientists are working to create the healthcare industry's most comprehensive corpus of data on epilepsy. Upon completion of this project, healthcare providers would be able to combine their own clinical patient assessment with the system's predictive analytics to determine the probability that specific approaches to care will be successful.

Dr. Iris Low-Friedrich, Executive Vice-President Global Projects and Development and Chief Medical Officer, UCB said: "UCB focuses on the creation of innovative networks because we recognize that delivering best-in-class solutions to patients requires collaboration with a diverse group of internal and external experts. We have partnered with IBM to explore this concept of streamlining large amounts of data into actionable approaches to epilepsy care."

Epilepsy, one of the most common diseases of the central nervous system, afflicts approximately 65 million people worldwide¹. A recent special issue of The Lancet²highlighted the significant unmet medical needs in epilepsy and called on public health officials to treat this disease as a global health priority.

UCB and IBM anticipate that deeper insight into the epilepsy patient population could potentially provide millions of patients with more personalized care and ultimately improved outcomes. This approach will help seed the foundation for the potential to leverage cognitive computing, natural language processing, and machine learning capabilities to raise the standard of care in epilepsy.

"Technologies, like analytics and cognitive computing applied to big data, are revolutionizing the way we deliver and receive care," said Robert Merkel, Global Healthcare and Life Sciences Industry Leader, IBM Global Business Services. "IBM is dedicating innovation and expertise to help UCB prove the predictive value of this technology that would arm physicians with information that will help them identify the best possible treatment options and improve quality of care for patients suffering from epilepsy."

As part of its open innovation model, UCB may look to collaborate with additional leaders in the epilepsy and healthcare technology communities to develop and broaden the reach of this project and improve long-term patient outcomes.

Phil Gattone, M.Ed., CEO of the Epilepsy Foundation and participant in the project's advisory board said, "The Epilepsy Foundation is very excited about the potential of this innovative approach for more personalized treatment management of epilepsy patients. Individuals fighting epilepsy and their care providers deserve the most current information to help them make informed decisions about their care in a timeframe that matters. This collaboration could benefit patients, their families and the healthcare system in a unique way."

For further information UCB

France Nivelle, Global Communications, UCB
T +32.2.559.9178, france.nivelle@ucb.com

Laurent Schots, Media Relations, UCB
T +32.2.559.9264, laurent.schots@ucb.com

For further information IBM

Holli Haswell, IBM External Relations
T +1.720.396.5485, hhaswell@us.ibm.com

Notes to the editor

About UCBUCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With 9,000 people in approximately 40 countries, the company generated revenue of EUR 3.4 billion in 2012. UCB is listed on Euronext Brussels (symbol: UCB).

About UCB Research CollaborationsUCB has adopted an open innovation model in which internal and external experts collaborate to address unmet needs for people living with severe diseases of the immune system and the central nervous system. As part of its commitment to raising the standard of care for patients, UCB is building these long-term collaborations and super networks with leading researchers and institutions to use cutting-edge scientific research and technology to deliver unique patient solutions.

About IBMTo learn more about IBM's Big Data and Analytics services, please visit:
http://www-935.ibm.com/services/us/gbs/business-analytics/.
Follow us on Twitter @IBMHealthcare or www.twitter.com/ibmhealthcare
Join in the discussion on the Smarter Healthcare LinkedIn Group
Watch our videos at www.youtube.com/ibmhealthcare

UCB Forward-Looking StatementThis press release contains forward-looking statements based on current plans, estimates and beliefs of management. All statements, other than statements of historical fact, are statements that could be deemed forward-looking statements, including estimates of revenues, operating margins, capital expenditures, cash, other financial information, expected legal, political, regulatory or clinical results and other such estimates and results. By their nature, such forward-looking statements are not guarantees of future performance and are subject to risks, uncertainties and assumptions which could cause actual results to differ materially from those that may be implied by such forward-looking statements contained in this press release. Important factors that could result in such differences include: changes in general economic, business and competitive conditions, the inability to obtain necessary regulatory approvals or to obtain them on acceptable terms, costs associated with research and development, changes in the prospects for products in the pipeline or under development by UCB, effects of future judicial decisions or governmental investigations, product liability claims, challenges to patent protection for products or product candidates, changes in laws or regulations, exchange rate fluctuations, changes or uncertainties in tax laws or the administration of such laws and hiring and retention of its employees. UCB is providing this information as of the date of this press release and expressly disclaims any duty to update any information contained in this press release, either to confirm the actual results or to report a change in its expectations.

There is no guarantee that new product candidates in the pipeline will progress to product approval or that new indications for existing products will be developed and approved. Products or potential products which are the subject of partnerships, joint ventures or licensing collaborations may be subject to differences between the partners. Also, UCB or others could discover safety, side effects or manufacturing problems with its products after they are marketed.

Moreover, sales may be impacted by international and domestic trends toward managed care and health care cost containment and the reimbursement policies imposed by third-party payers as well as legislation affecting biopharmaceutical pricing and reimbursement.

References

1. Epilepsy Foundation. About Epilepsy. Accessed 5/15/13.
2. The Lancet. "Wanted: a global campaign against epilepsy." The Lancet no. 380 (9848):1121.

SOURCE UCB

Actor John O'Hurley Hosts New AAN Free Epilepsy Video

May 15, 2013 11:22 AM EDT

MINNEAPOLIS, May 15, 2013 /PRNewswire-USNewswire/ -- Television actor and "Dancing with the Stars" winner John O'Hurley is the host of Epilepsy: A Guide for Patients and Families, the latest free patient education DVD and guidebook produced by the American Academy of Neurology (AAN) and its foundation, the American Brain Foundation. This valuable resource answers important questions for people with newly diagnosed epilepsy and their caregivers.

Free copies of the DVD and guidebook can be ordered by calling (800) 879-1960.  In addition, the guidebook can be downloaded for free at http://patients.aan.com/go/videos.

Among his many credits, John O'Hurley played J. Peterman on "Seinfeld," hosted "Family Feud," and was a popular contestant on "Dancing with the Stars." His knowledge of epilepsy is personal, as O'Hurley's sister died of epilepsy at age 16. He has also worked on behalf of The Epilepsy Foundation. 

Expert advice to help people and their families understand epilepsy is presented by Gregory D. Cascino, MD, professor of neurology and chair of the Division of Epilepsy at the Mayo Clinic inRochester, MN, and Daniel Hoch, PhD, MD, neurologist and epilepsy specialist at Massachusetts General Hospital in Boston. Both Cascino and Hoch are Fellows of the American Academy of Neurology.

The epilepsy DVD and accompanying guidebook provide an overview of the disease and its causes, how it is diagnosed and treatments available. The kit also includes a seizure diary form and helpful tips on living well with epilepsy.

The video will be broadcast in several television markets: Chicago WBBM/Channel 2 – Saturday, May 18, at 12:30 p.m. CST; Houston KHOU/Channel 11 – Saturday, May 18, at 12:30 p.m. CST; Boston WBZ/Channel 4 – Saturday, May 18, at 1:30 p.m. EST; Atlanta WGCL/Channel 46 –Sunday, May 19, at 12:30 p.m. EST; San Francisco KPIX/Channel 5 – Sunday, May 19, at 4:00 p.m. PST

To obtain your free DVD or for more information, please contact the American Academy of Neurology at (800) 879-1960 or memberservices@aan.com.

View the video at http://www.youtube.com/aanchannel orhttp://www.youtube.com/CureBrainDisease.

Epilepsy is diagnosed in an estimated one out of every 26 people in the United States.

Epilepsy: A Guide for Patients and Families is a presentation of the American Academy of Neurology and the American Brain Foundation and is sponsored by Sunovion Pharmaceuticals Inc.

About the American Academy of Neurology The American Academy of Neurology, an association of more than 26,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, brain injury, Parkinson's disease and epilepsy. For more information about the American Academy of Neurology, visithttp://www.aan.com or find us on Facebook, Twitter, Google+ and YouTube.

About the American Brain Foundation The American Brain Foundation, the foundation of the American Academy of Neurology, is an independent 501(c)(3) organization that funds the most crucial research to cure brain disease, such as Alzheimer's disease, stroke, Parkinson's disease, neuropathy, multiple sclerosis, and epilepsy. Brain disease affects more than 50 million people in the United States alone. In moving toward its vision, the American Brain Foundation's goal is to reduce the prevalence of brain disease 50 percent by 2040.  Learn more athttps://www.curebraindisease.org/. Follow us on Facebook, Twitter, Google+ and YouTube.

About Sunovion Pharmaceuticals Inc. (Sunovion) Sunovion is a leading pharmaceutical company dedicated to discovering, developing and commercializing therapeutic products that advance the science of medicine in the Psychiatry & Neurology and Respiratory disease areas and improve the lives of patients and their families. Sunovion, an indirect, wholly-owned subsidiary of Dainippon Sumitomo Pharma Co., Ltd., is headquartered in Marlborough, Mass. More information about Sunovion Pharmaceuticals Inc. is available at https://www.sunovion.com.

SOURCE American Academy of Neurology

Epilepsy Belt Alerts Caregivers Of Kid’s Seizure

Engineering students have designed a belt that monitors signs of epileptic seizures and sends information via Bluetooth to a caregiver’s computer or smart phone.

The belt detects increased electrical conductance in the skin and changes in respiration rate, both signs that a seizure is under way. Though children or adults can wear the belt, the students designed it with kids in mind. They want parents to be aware of when a child is having a seizure, especially during the night.

The members of ‘Team Seize and Assist’ built the belt as their senior capstone design project, required of most Rice engineering students. Gary Woods, a Rice University professor in the practice of computer technology and electrical and computer engineering, advised the team.

The SMART (Seizure Monitoring and Response Transducer) belt has two silver/silver chloride electrodes, like those used in lie detectors, positioned on the torso. They sense electrical conductivity. The belt has another sensor that monitors breathing. The sensors are attached to a removable electronic module that acquires and transmits the signals. When the sensors show signs of a seizure, the transmitter sends data via Bluetooth to either a computer or smart phone.

“Our belt is targeted for ages 6 years and up,” student designer Tiffany Varughese says. “It works best during the nighttime because there’s not a lot of other stimuli, and we can definitely detect changes in the two signs.”

While an electroencephalograph (EEG) is the standard of care for seizure detection, it is expensive and can’t be used 24/7, Varughese explains. The students aimed for an inexpensive, comfortable device that could be worn around the clock under a patient’s clothes and not only monitor for seizures but also compile a record of seizure occurrences that would be of value to their doctors.

The students say testing has not been performed on people with epilepsy, but their own tests on healthy volunteers, as approved by the university’s Institutional Review Board (IRB), were promising.

To gather data, volunteers were asked to hyperventilate or they were startled by a loud noise, both of which prompt a “fight-or-flight” response similar to what a person with epilepsy experiences during a seizure.

The students say bed-vibration sensors are often used to detect convulsions that occur in 20 percent of epileptic seizures, but they are prone to false positives. “You don’t want parents waking up too frequently, or they won’t use the device,” Varughese says.

The students see their device as a way to help many of the 2.3 million people with epilepsy in the United States. “The main goal of our project was to build the sensors and demonstrate that they work, and show they have the potential to detect seizures,” says Charles Park, a senior engineering student.

While it does not stop a seizure in progress, such an early warning device will help parents keep their children safe, Varughese added. “Having someone there to make sure the person is stable is the most important thing.”

Cyberonics Inc sponsored the project.

Source: Rice University

To see the full story to include a video on the belt:

http://www.futurity.org/health-medicine/epilepsy-belt-alerts-caregivers-of-kids-seizure/

Angels4Epilepsy's Delivery to Peyton Manning and Riley Children's Hospitals

A big thank you to Stacey Burns our Indiana volunteer for taking care of the Peyton Manning and Riley Children's Hospitals on behalf of Angels4Epilepsy!

Hernando Moves in with Another Child that has Epilepsy #angels4epilepsy

Hernando finally went back to work and found his way to this little cutie!  As you can see, he doesn't let his epilepsy get him down!

Our sponsorship for bears gifted includes Angels4Epilepsy matching every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group.

Last month, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy.

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.

Epilepsy Cured in Mice Using Brain Cells

Epilepsy that does not respond to drugs can be halted in adult mice by transplanting a specific type of cell into the brain, UC San Francisco researchers have discovered, raising hope that a similar treatment might work in severe forms of human epilepsy.

UCSF scientists controlled seizures in epileptic mice with a one-time transplantation of medial ganglionic eminence (MGE) cells, which inhibit signaling in overactive nerve circuits, into the hippocampus, a brain region associated with seizures, as well as with learning and memory. Other researchers had previously used different cell types in rodent cell transplantation experiments and failed to stop seizures.

Cell therapy has become an active focus of epilepsy research, in part because current medications, even when effective, only control symptoms and not underlying causes of the disease, according to Scott C. Baraban, PhD, who holds the William K. Bowes Jr. Endowed Chair in Neuroscience Research at UCSF and led the new study. In many types of epilepsy, he said, current drugs have no therapeutic value at all.

“Our results are an encouraging step toward using inhibitory neurons for cell transplantation in adults with severe forms of epilepsy,” Baraban said. “This procedure offers the possibility of controlling seizures and rescuing cognitive deficits in these patients.”

The findings, which are the first ever to report stopping seizures in mouse models of adult human epilepsy, were published online May 5 in the journal Nature Neuroscience.

During epileptic seizures, extreme muscle contractions and often a loss of consciousness can cause seizure sufferers to lose control, fall and sometimes be seriously injured. The unseen malfunction behind these effects is the abnormal firing of many excitatory nerve cells in the brain at the same time.

In the UCSF study, the transplanted inhibitory cells quenched this synchronous, nerve-signaling firestorm, eliminating seizures in half of the treated mice and dramatically reducing the number of spontaneous seizures in the rest. Robert Hunt, PhD, a postdoctoral fellow in the Baraban lab, guided many of the key experiments.

In another encouraging step, UCSF researchers reported May 2 that they found a way to reliably generate human MGE-like cells in the laboratory, and that when transplanted into healthy mice, the cells similarly spun off functional inhibitory nerve cells. That research can be found online in the journal Cell Stem Cell.

In many forms of epilepsy, loss or malfunction of inhibitory nerve cells within the hippocampus plays a critical role. MGE cells are progenitor cells that form early within the embryo and are capable of generating mature inhibitory nerve cells called interneurons. In the Baraban-led UCSF study, the transplanted MGE cells from mouse embryos migrated and generated interneurons, in effect replacing the cells that fail in epilepsy. The new cells integrated into existing neural circuits in the mice, the researchers found.

“These cells migrate widely and integrate into the adult brain as new inhibitory neurons,” Baraban said. “This is the first report in a mouse model of adult epilepsy in which mice that already were having seizures stopped having seizures after treatment.”

The mouse model of disease that Baraban’s lab team worked with is meant to resemble a severe and typically drug-resistant form of human epilepsy called mesial temporal lobe epilepsy, in which seizures are thought to arise in the hippocampus. In contrast to transplants into the hippocampus, transplants into the amygdala, a brain region involved in memory and emotion, failed to halt seizure activity in this same mouse model, the researcher found.

Temporal lobe epilepsy often develops in adolescence, in some cases long after a seizure episode triggered during early childhood by a high fever. A similar condition in mice can be induced with a chemical exposure, and in addition to seizures, this mouse model shares other pathological features with the human condition, such as loss of cells in the hippocampus, behavioral alterations and impaired problem solving.

In the Nature Neuroscience study, treated mice – in addition to having fewer seizures – became less abnormally agitated, less hyperactive and performed better in water-maze tests.

Additional UCSF study authors include Arturo Alvarez-Buylla, PhD, UCSF professor of neurological surgery; John Rubenstein, MD, PhD, UCSF professor of psychiatry; and Kelly Girskis, staff research associate. The research was funded by the National Institutes of Health and by the California Institute of Regenerative Medicine.

http://www.zeitnews.org/life-sciences/biotechnology/epilepsy-cured-mice-using-brain-cells

SUDEP Institute

Three months ago on February 26, a coalition of advocates and professionals working in SUDEP took another big step forward in their fight against SUDEP by formally launching the SUDEP Institute.

What is the SUDEP Institute?

The SUDEP Institute was forged by the Epilepsy Foundation and the coalition of leading organizations and individuals whose major initiatives are to raise SUDEP awareness and to stop SUDEP.

In addition to medical professionals and academics interested in SUDEP, participating organizations and agencies include American Academy of Neurology, American Epilepsy Society, Autism Speaks, Candlelight Concerts for Epilepsy Awareness, Center for Disease Control, Chelsea Hutchison Foundation, Citizens United for Research in Epilepsy (CURE), Danny Did Foundation, Dravet Syndrome Foundation, Dup15q Alliance, Epilepsy Australia, Epilepsy Bereaved, Epilepsy Foundation of Colorado, ICE Alliance, Lennox-Gastaut Syndrome Foundation, National Institute of Neurological Disorders and Stroke (NINDS), North American SUDEP Registry, Northern Regional Medical Examiner Office and SUDEP Aware.

The SUDEP Institute Executive Leadership Team consists of the following members:Cyndi Wright, Director of Epilepsy Foundation SUDEP Institute; Orrin Devinsky, MD, Director of NYU Epilepsy Center & North American SUDEP Registry; Phil Gattone, President and CEO of Epilepsy Foundation; Warren Lammert, Board Member of Epilepsy Foundation and Co-Founder of Epilepsy Therapy Project; and Steve Wulchin, CEO of Freewave Technologies, and a father who lost his son to SUDEP.

The SUDEP Institute also has a Board of Overseers, members of which are Elizabeth Donner, MD, FRCPC of Hospital for Sick Children in Toronto Canada, and Co-founder of SUDEP Aware; Gardiner Lapham, RN, MPH, Chair-Elect of CURE, Co-Chair of Partners Against Mortality in Epilepsy, and a mother who lost her son to SUDEP; Kim Macher, Director of Epilepsy Therapy Project; Gail Pundsack, Executive Director of Epilepsy Foundation Colorado; Elson So, MD of Mayo Clinic, Vice President of the American Epilepsy Society; Tom Stanton, Executive Director of the Danny Did Foundation; and Vicky Whittemore, PhD, Program Director of Channels, Synapses and Circuits Cluster of the NINDS.

Click to read the entire story.

New Collaboration: Felt Paper Dolls to Benefit Children with Epilepsy and Cancer

When Jamie and I started Angels4Epilepsy it was due to having a first hand account on how devastating chronic conditions can be for parents and children. As the mother of three girls, my life changed dramatically in 2008 when within two week's of one another, my youngest, Danielle, had her first asthma-like attack and then my middle child, Jamie, had her first seizure. That started the beginning of a desire to make a difference with Jamie since she experienced first hand numerous hospitalizations and procedures. Coupled with seeing her younger sister, Danielle, almost die due to an unknown pulmonary condition and medical error, Jamie was even more inspired to do something.

I lost track on how many trips to the hospitals we had from 2008 through 2010 but the impact was huge. This is how Angels4Epilepsy was started. We wanted to give back to other children who were hospitalized to help offset the fear that children experienced along with the boredom. A secondary goal was to raise awareness about epilepsy as 2.2 million Americans have epilepsy and 730,000 Americans still have seizures in spite of using medications to help.

We started with delivering gift bags to children hospitalized in Georgia and Florida. We then grew to accept a couple of volunteers who delivered and still deliver to hospitals in Ohio and Indiana. To date, we have delivered to hospitals in Georgia, Florida, Indiana, Ohio and Texas to include two Ronald McDonald Houses. As we grew, we co-founded a support group on Facebook to provide TG Bears to children in the group when undergoing an epilepsy related procedure. To date, we have provided over half the funding for 57 bears!

Our Christmas 2012 delivery in Texas included HOPE Dolls which is a project from Eileen's True Hope Project and was funded by Lynne and Randy Stiefler. Eileen is a 12 year old who wanted to support her friend who was diagnosed with leukemia. The HOPE dolls are provided to children with cancer to show that even without hair, they are beautiful. This provided a branch off as no matter what, we want to support children.

Our newest project that began back in April grew from a collaboration with three wonderful women who strive to make a difference - Angee, Aimee and Melissa.

Children love to play with dolls and they love dress up but sometimes playing with an actual doll can be difficult due to circumstances with a particular chronic condition or where the child might be confined. Paper dolls were always fun but they are not durable, which is where felt comes in. Felt paper dolls are a fun way to give children something to do, especially while sitting in a hospital bed or waiting for an EEG for seizure detection. With a bit of velcro, they make a great way to allow children to play. Angee from A Bit Creative and Aimee from Taylor Made With Love ~ Inspired by Zoe didn't stop there with designing and creating the digital design files of adorable dolls for children to use with an embroidery sewing machine, rather they created a new set that helps children with pediatric cancers and children with epilepsy feel special and helps to raise funds in the process.

The digital design set for epilepsy is offered in two boy versions and two girl versions, with clothing to include shoes, pants, shirt, hospital gown with Angels4Epilepsy butterflies on it, an EEG cap and a Jamie bear that also has her own cap. The flexibility with these dolls and Jamie bear is that they can be dressed up to accompany the child when he's ready for his own EEG.

$5 from every epilepsy felt doll digital design set sold will come to Angels4Epilepsy to help us give back to keeping Jamie's vision going. The $5 will be used to purchase finished dolls to be included in hospital deliveries (see below on how to purchase a finished doll).

All artwork for the Angels4Epilepsy fundraising project was donated from A Bit Creative by Angee Perry.

   

The digital design set for pediatric cancer is offered in a beautifully bald boy and girl version with clothing to include shoes, pants, shirt, hospital gown with Angels4Epilepsy butterflies on it, 2 boy hairstyle wigs, 2 girl hairstyle wigs and a Jamie bear. The flexibility with these dolls is that they can be dressed up to accompany the child while hospitalized and then dressed up with a wig when they're ready to go home.

$5 from every pediatric cancer felt doll digital design set sold will go to St. Baldrick's, where 100% of every dollar raised is invested in the best possible childhood cancer research, with research funding priorities set so that every dollar makes the greatest impact possible. $5 from every pediatric cancer felt doll wigs set, designed to work with the pediatric cancer dolls, will also go to St. Baldrick's.

All artwork for the St. Baldrick's fundraising project was donated from A Bit Creative by Angee Perry.

   

There are more dolls, wigs, clothing and accessories digital design options available at Taylor Made With Love ~ Inspired by Zoe for those who want more!

For those who can't use the digital design files that work in an embroidery sewing machine, there are finished dolls, wigs, clothing and accessories available with Melissa from Izzy's Embroidery Bow Boutique. The finished epilepsy and pediatric cancer dolls are available for $20 each, with $5 from each epilepsy felt doll going to Angels4Epilepsy and $5 from each pediatric cancer felt doll going to St. Baldrick's. The $5 proceeds donated to Angels4Epilepsy will also be put in a fund to purchase future finished dolls for Jamie's deliveries to hospitals.

Whenever we can move forward and provide another opportunity to bring smiles to children hospitalized, we know we are growing. We hope to be able to provide these adorable epilepsy dolls in our hospital deliveries as well as provide to EEG technicians to give to children after they have had their EEG as a reward for being such troopers.

If you would like to donate to this project or to Angels4Epilepsy in general, you can make a donation to our PayPal account. All donations to our PayPal account are tax deductible as we are a 501(c)(3) organization. Thank you for your support!

Angels in My Pocket Christmas Stocking to a Sick Child Project: Accepting Applications

Angels in My Pocket is a wonderful endeavor by a woman wanting to make a difference in the lives of sick children in treatment at Christmas.  Johanna sews stockings and provides these to children who are ill and undergoing treatment.  Even though she's a cancer advocate, she doesn't exclude children with other ailments.  Johanna is joined by others who provides donations as well to make this project a success.

If you would like to sign up your child and siblings to receive a free stocking, private message Johanna with your name and address and she will send you an application.  Please note that the child MUST currently be in treatment and your child MUST have a Facebook page.

All completed applications must be returned to Johanna by October 15, 2013.

To learn more, you can join the Facebook event for Angels in My Pocket and like Angels in My Pocket on Facebook.

57 Bears = 57 Happy Children with Epilepsy

57 Hernando bears have been delivered to 57 children across the country! Angels4Epilepsy previously won a Pepsi Grant and utilized a portion of the funds to provide the start to a Facebook support group for parents who have children with epilepsy. Angels4Epilepsy co-founded this group with TG Bears. We provide $1.45 for every dollar donated and TG Bears provides the bears at a discounted price. In addition to this endeavor, Angels4Epilepsy, along with volunteers, provide gift bags to children hospitalized in Georgia, Indiana, Ohio and Texas. Stay tuned for a new project we are working on to enhance our hospital deliveries!

If you like what we're doing, please consider donating to us via the link on the page.  Every donation is tax deductible.  Thank you!

Happy 10th Birthday to Jamie!

US Facing a Neurology Shortage per American Academy of Neurology

The American Academy of Neurology sent out a press release on April 17th, 2013 relaying a critical message about the US facing a shortage of neurologists.  On April 23, 2013, as nearly as 150 neurologists will descend on Capital Hill to encourage Congress to protect patient's access to neurologists as one in six Americans are currently affected by brain disease.  This is mostly due to the current unfair Medicare reimbursement system which impacts future students and residents when they consider pursuing a specialty in neurology.

To view the entire press release, click on the American Academy of Neurology link.

Hernando Continues Journey Across the Country

Hernando has been very, very busy and this time, he brings a big smile to this cutie!

Our sponsorship for bears gifted includes Angels4Epilepsy matching every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group. 

Last month, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy. 

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.

Hernando AKA Rose Berry Makes Little Girl with Epilepsy Smile

Hernando has been busy as he decided to stay with his new friends in spite of being renamed Rose Berry.

Our sponsorship for bears gifted includes Angels4Epilepsy matching every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group. 

Last month, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy. 

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.

Hernando Making His Rounds Cheering Up Little Boy with Epilepsy

Hernando has been busy again as he stopped in to see this cutie and made an instant friend!

Our sponsorship for bears gifted includes Angels4Epilepsy matching every dollar of member contributions of $1.45 and TG Bears provides each bear at $27.01 less than retail to the group. 

Last month, Angels4Epilepsy contributed $630.75 for bears to children with epilepsy. 

If you want to donate to Angels4Epilepsy, please check out our page at www.angels4epilepsy.org. We are a 501c3 so donations are tax deductible.