Friday, October 17, 2014

Few Neurologists Discuss Death Risk With Epileptic Patients



SUDEP (Sudden Unexplained Death in Epilepsy) is a very real tragedy that happens to people with epilepsy. It's very sad to read story after story about SUDEP and it's one that our neurologists don't mention at all or not enough. I suppose they don't want to worry the parents or the patient but for me, I'd rather know what risk I face than to be in the dark. According to a new article, it's not discussed because the risk is low and there are no known prevention techniques.

Here are some of the key points from the article:

David J. Thurman, MD, adjunct professor of neurology, Emory University, Atlanta, Georgia, and colleagues used pooled data from three level 2 studies (reasonably good sensitivity of case ascertainment, reasonably high positive predictive value, and relatively low risk of bias) to calculate a crude rate of 0.81 cases of SUDEP annually per 100,000 in the general population.

Assuming an overall epilepsy prevalence of 7.1 per 100,000 (from a separate 2007 systematic review of epilepsy occurrence in high-income countries), they estimated a crude annual incidence of 1.16 SUDEP cases per 1000 people with epilepsy.

According to Dr Thurman's paper, reported cases of SUDEP were highest in the third and fourth decades of life, with rates declining markedly in the sixth decade. Few cases were reported in the first decade of life.

Using population statistics, Dr Thurman estimated that in 2013, SUDEP resulted in 2750 deaths in the United States and 3994 deaths in the 28 nations of the European Union. These numbers, said the authors, are far smaller than deaths reported for Alzheimer's disease, stroke, and even Parkinson's disease.


To read more, click here on risks of SUDEP.

Raise Epilepsy Awareness with Bravelet Bracelets and Support @Angels4Epilepsy, Inc.


Bravelets has new bracelets for a limited time with $10 going back to Angels4Epilepsy, Inc. to deliver more stuffed animals to children with epilepsy and/or asthma.  Check them out today and help us out while raising epilepsy awareness by wearing a bracelet!



Sunday, July 27, 2014

Angels4Epilepsy, Inc. & #Asthma Too Participated at the Indiana #Epilepsy Awareness Day Second Year in a Row

Our wonderful volunteer, Stacey Burns, presented information about Angels4Epilepsy, Inc for the second year in a row at the Epilepsy Awareness Day in Indianapolis. A BIG thanks to Stacey!





 





 

Wednesday, July 16, 2014

A Potential New Treatment For Childhood Epilepsy (BCECTS or Rolandic Epilepsy

A Potential New Treatment For Childhood Epilepsy

Posted Jul 16 2014 in Grants made in 2014 / News from Epilepsy Research UK
Diagram depicting the biofeedback loop. Ref: www.counsellingpsychologist.ie
EEG-biofeedback is a non-invasive learning strategy that can enable a person to alter his/her brain wave activity.  It has already been shown to be a safe and effective therapeutic option for some adults with epilepsy, but as yet there are no data available for children.Mrs Gina Parker and colleagues, at Birmingham Children’s Hospital NHS Trust, have been awarded £9,965 over 12 months, for pilot grant entitled Feasibility of EEG-biofeedback as a potential treatment for benign childhood epilepsy with centro-temporal spikes (BCECTS), in which they will assess the feasibility of using EEG-biofeedback as a therapeutic tool in children with BCECTS.
BCECTS (or Rolandic epilepsy) is the most common childhood epilepsy syndrome, but because seizures often occur at night, and are usually ‘outgrown’ in adolescence, it is often left untreated. Research now suggests that disruption to sleep during BCECTS can cause memory problems, and so the need to treat is being reviewed. Many parents are reluctant to have their child take anti-epileptic drugs (which can have pronounced side effects), especially when their seizures don’t obviously affect their daily life, and so a non-invasive approach would be very welcome.
During the study the team will recruit children with a diagnosis of BCECTS, who are not being prescribed any medication. Each child will be asked to attend a neurology appointment, where they will undergo a baseline 24-hour EEG assessment. Their EEG activity will be analysed on-line; and it will then be used to drive a video game, which will be displayed on a screen for the child to see. The child will then be asked to ‘work the video with their brain’; and the system will be set up so that the video game moves faster when the brain is relaxed. In this way the child will be trained to maintain a state of brain relaxation (less prone to seizures), and they will be able to see when they are achieving this state. The children will attend regular 30-minute training sessions with for six weeks, and they will receive video feedback every week. The researchers will compare the ‘current’ EEG to the baseline 24-hour EEG at specific time points during training, in order to measure a child’s progress. They will also compare the frequency of EEG abnormalities during the 24-hour recording at baseline and at the end of the study, to see if there has been any reduction.
If successful, this pilot grant will hopefully prompt larger studies into EEG-biofeedback as a new, non-invasive treatment for BCECTS.

Epilepsy Therapeutics in Major Developed Markets to 2019 - New AEDs with Novel Mechanisms of Action Signal a Shift in Treatment Patterns

July 15, 2014, 3:58 p.m. EDT

Epilepsy Therapeutics in Major Developed Markets to 2019 - New AEDs with Novel Mechanisms of  Action Signal a Shift in Treatment Patterns


LONDON, July 15, 2014 /PRNewswire/ -- Reportbuyer.com has added a new market research report:

Epilepsy Therapeutics in Major Developed Markets to 2019 - New AEDs with Novel Mechanisms of Action Signal a Shift in Treatment Patterns

https://www.reportbuyer.com/product/2052297/Epilepsy-Therapeutics-in-Major-Developed-Markets-to-2019---New-AEDs-with-Novel-Mechanisms-of-Action-Signal-a-Shift-in-Treatment-Patterns.html

Epilepsy Therapeutics in Major Developed Markets to 2019 - New AEDs with Novel Mechanisms of Action Signal a Shift in Treatment Patterns

Summary

GBI Research has released its pharma research, "Epilepsy Therapeutics in Major Developed Markets to 2019 - New AEDs with Novel Mechanisms of Action Signal a Shift in Treatment Patterns", which provides in-depth analysis of epilepsy market within the eight major developed markets of the US, UK, France, Germany, Italy, Spain, Japan and Canada. The report provides an estimation of the market size for 2012, along with market forecasts to 2019. It also covers disease epidemiology, treatment algorithms, treatment patterns, in-depth analysis of the pipeline, and deal analysis.

The value of the epilepsy market in the major developed markets amounted to an estimated $3.4 billion in 2012 and is expected to register a Compound Annual Growth Rate (CAGR) of 3.9% to reach $4.5 billion by 2019. This modest growth is attributed to the recent approval of drugs with novel mechanisms of action that are expected to offer more therapeutic options to prescribers. The US takes major share of 55% of the global epilepsy market. In the US, three new anti-epileptic drugs have been approved since 2012: Trobalt, Aptiom, and Fycompa and another, brivaracetam, is expected also to be launched during the forecast period. Of these, Trobalt and Fycompa have novel mechanisms of action and improved safety and tolerability that elicited significant interest from prescribers. Continued uptake of second- and third-generation anti-epileptic drugs is also expected to contribute towards revenues in these eight regions. However, the epilepsy market could face the restricting influence of generic competition as a result of recent patent expiries in all major markets of two key branded drugs, Keppra and Lamictal.

Scope

- A brief introduction to epilepsy, including disease pathogenesis, risk factors, diagnosis and treatment options
- In-depth analysis of major marketed products covering product performance, product life-cycle and a heat map depicting comparative analysis of safety and efficacy parameters
- A comprehensive review of the epilepsy pipeline which includes individual analysis of promising late-stage pipeline drugs that are most likely to enter the market during the forecast period. The pipeline is analyzed on the basis of Phase distribution, molecule type and molecular target
- Additional clinical trial analysis by Phase, trial size, trial duration and program failure rate for each molecule type and mechanism of action
- Multi-scenario forecasts of the epilepsy market over the 2012–2019 period in the eight major developed markets
- In-depth analysis of licensing and co-development agreements and an overview of key agreements that could impact growth trends
- Key drivers and restraints that have had and are expected to have a significant impact upon the market

Reasons to buy

- Align your product portfolio to markets with high growth potential
- Develop market entry and expansion strategies by identifying the potential regions and therapeutic segments poised for strong growth
- Devise effective, tailored strategies for each country through the understanding of key drivers and barriers in the anti-epileptic drugs market
- Develop key strategic initiatives based upon an understanding of key focus areas and leading companies
- Accelerate and strengthen your market position by identifying key companies for mergers, acquisitions and strategic partnerships 

Read the full report:Epilepsy Therapeutics in Major Developed Markets to 2019 - New AEDs with Novel Mechanisms of Action Signal a Shift in Treatment Patternshttps://www.reportbuyer.com/product/2052297/Epilepsy-Therapeutics-in-Major-Developed-Markets-to-2019---New-AEDs-with-Novel-Mechanisms-of-Action-Signal-a-Shift-in-Treatment-Patterns.html
Website: www.reportbuyer.com
SOURCE ReportBuyer

Tuesday, July 8, 2014

Shop at Bravelets for Epilepsy Awareness Jewelry and $10 of Each Purchase Goes to Angels4Epilepsy, Inc.


Here is another way you can help Jamie and Danielle deliver to more children with epilepsy and/or asthma!  Shop at Bravelets for Epilepsy Awareness Jewelry and $10 of Each Purchase Goes to Angels4Epilepsy, Inc.

Sunday, July 6, 2014

Angels4Epilepsy, Inc. & Asthma Too: Young Sisters Send Package to Child with Epilepsy


The girls sent an El Paso PetSmart Donated Chase Pup, a copy of Jamie's book (I Have Epilepsy It Doesn't Have Me on Amazon) and an USB medical history bracelet to this little cutie who has epilepsy.

Angels4Epilepsy, Inc. & Asthma Too Delivers a Kohls Cares for Kids' Snoopy to Another Child


Sisters, Jamie and Danielle, delivered a Snoopy to this adorable little one.  As you can see, she seems to have made a new friend!

Sunday, June 29, 2014

11 Year Old Used Kohls Cares for Kids Gift Card Win to Purchase More for Kids with #Epilepsy and #Asthma


Jamie used her Kohls Cares for Kids gift card she won along with additional funds to purchase more stuffed animals to give to kids with #Epilepsy and #Asthma.

Thursday, June 26, 2014

Angels4Epilepsy, Inc. & Asthma Too Delivers to Evansville, Indiana


Angels4Epilepsy, Inc. & Asthma Too Delivers to Evansville, Indiana thanks to the girls' latest volunteer, Bea!  Thank you so much for all you have done with delivering to the hospital in Evansville and the Ronald McDonald House and your fundraising visions!

Friday, June 6, 2014

Shop at Amazon and Angels4Epilepsy, Inc will Receive .5%



You can donate to Angels4Epilepsy, Inc. via Amazon Smile! When you shop via this link, select Angels4Epilepsy, Inc as your charity and we'll receive .5%!  There is no cost to you either so it's a win-win!  Help bring smiles to little children across the country battling epilepsy and/or asthma!

http://smile.amazon.com/ref=smi_ext_fbp_lds_smi

Thursday, May 22, 2014

Angels4Epilepsy, Inc. & Asthma Too Sisters Deliver to Another Child with Epilepsy


Another cutie from our Angels4Epilepsy, Inc. & Asthma Too support group holding her donated PetSmart stuffed animal along with the book Jamie wrote (found on Amazon) about her journey with epilepsy. We also included an USB medical history bracelet to help keep track of medical records.

http://www.amazon.com/Have-Epilepsy-It-Doesnt-Me/dp/1475165846/ref=as_li_ss_til?tag=stayouyoutipa-20&linkCode=w01&linkId=XWCDR7A5DD3QLNYR&creativeASIN=1475165846

Can cannabis prevent childhood seizures? Experts unsure


Some parents of children with severe epilepsy say that cannabis helps prevent their children's seizures, but experts caution that it remains unproven whether using the drug to treat epilepsy is safe or effective.

One mother in Colorado turned to cannabis to treat her daughter's intractable seizures, which had started when her daughter was 3 months old, and occurred as often as 50 times a day, according to a new report of the girl's case, published online May 22 in the journal Epilepsia.

Read the rest of the article about medical marijuana/cannabis for epilepsy here.

Wednesday, May 21, 2014

Angels4Epilepsy, Inc. & Asthma Too: Sisters Deliver to Another Child with #Epilepsy and/or Asthma


Another adorable child from our Angels4Epilepsy, Inc. & Asthma Too support group holding his Easter bunny from Build-A-Bear the girls sent to bring a smile in time for Easter along with the book Jamie wrote (found on Amazon) about her journey with epilepsy. We also included an USB medical history bracelet to help keep track of medical records.

http://www.amazon.com/Have-Epilepsy-It-Doesnt-Me/dp/1475165846/ref=as_li_ss_til?tag=stayouyoutipa-20&linkCode=w01&linkId=XWCDR7A5DD3QLNYR&creativeASIN=1475165846

Monday, May 19, 2014

@Angels4Epilepsy : Young Sisters Deliver to Another Child with #Epilepsy and/or #Asthma

Another cutie receiving her stuffed animal from Build-A-Bear, Jamie's book about her journey with epilepsy and an USB bracelet from the girls that supports children with epilepsy and/or asthma.


Tuesday, May 13, 2014

Another Child with Epilepsy and/or Asthma Receives Gifts from Angels4Epilepsy, Inc. & Asthma Too Sisters

Another adorable child from our support group holding his Easter bunny from Build-A-Bear the girls sent him to bring a smile in time for Easter along with the book Jamie wrote (found on Amazon) about her journey with epilepsy.  We also included an USB medical history bracelet to help keep track of medical records.





Thursday, May 8, 2014

Angels4Epilepsy, Inc. & Asthma Too Sisters Deliver to El Paso Children's Hospital's EEG Unit

The girls delivered 25 of the donated PetSmart stuffed animals along with two EEG felt dolls for educational purposes to the El Paso Children's Hospital today.  Every time we make a delivery, they both say how much they love this!


Friday, May 2, 2014

UCB Offers 30 One-Time Scholarships of Up to $5,000 for Student/Family/Caregiver Living with Epilepsy


The UCB Family Epilepsy Scholarship Program™ offers educational scholarships to people living with epilepsy, family members and caregivers who demonstrate academic and personal achievement. This year marks the 10th anniversary of the scholarship program. Since 2005, UCB has awarded $1,400,000 in scholarships to more than 275 deserving people who have applied their awards to undergraduate and graduate studies.

To apply and learn more, click here:  Epilepsy Scholarships