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Issue: April 2013
Welcome to Epilepsy News brought to you by the Epilepsy Foundation of New Jersey. We pride ourselves in sending you the most up-to-date information about epilepsy events, conferences, and issues that are important to you.
Be sure to check this email, our website and thetrainingcalendar.org for information on rescheduled events.
You may also find an archive of past issues and additional information at www.efnj.com | |
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Family Resource Network to Host "New World" Tour
How much do you know about this "new world" of DDD, DCF, DDS and Medicaid?
The Family Resource Network's New World Tour 2013 is set to kick off in April with a series of events to bring you information about, Medicaid Eligibility, Changes to the DDD system and accessing the Children's System of Care (CSOC) for people with intellectual and developmental disabilities. On site information sessions will be held statewide.
Learn what services FRN and its affiliates have to offer.
See what changes we are making in response to government reorganization and what you will need to know.
Share ideas and needs for new services.
Click here for dates and locations to learn about the next steps in to understanding the Children's System of Care (CSOC). For Children with Intellectual and Developmental Disabilities.
Click here for dates ad locations to learn about the next steps to understanding Medicaid Eligibility and DDD Services. For adults with Intellectual and Developmental Disablities.
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Epilepsy Foundation of NJ
is a state-wide, non-profit charitable agency dedicated to helping to improve the quality of life for people affected by epilepsy and their loved ones. More "About Us"
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Our affiliates:
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Medicaid Eligibility for Adults Age 21 and Over
Effective January 22, 2013, the Division of Developmental Disabilities (Division) eligibility regulations have changed to require Medicaid eligibility as a condition of receiving Division-funded services. As a result of this change:
- Individuals who are new to the Division will be required to both meet functional criteria and have Medicaid eligibility before they can begin receiving any services from the Division.
click here to continue reading.
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Support the Epilepsy Foundation of NJ
Save the Date: Shore Walk for a Brighter Tomorrow
May 11, 2013 at our New Location in Long Branch
Join the Family Resource Network on May 11, 2013 at our NEW LOCATION!!
The Great Lawn, Long Branch, NJ
Walk will take place rain or shine!
10:30-12pm Check in at the Great Lawn
12pm Walk
1-3pm Family Fun Day
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NJ Makes Top Two & Three at National Walk Saturday, April 20, 2013, Washington, D.C.
The 7th Annual National Walk for Epilepsy continued to bring attention to what Epilepsy is and is not. As we walked together April 20th at the National Mall in Washington D.C. we sent a strong message to others across the nation that people with epilepsy are deserving of respect and are strong members of our community. Epilepsy deserves to be better understood!
If you were not able to make it to the Walk but would still like to make a donation you can go to www.walkforepilepsy.org and click on the create a team tab. Under Team Company, write "Epilepsy Foundation of New Jersey." By typing in EFNJ, the money that you raise will stay in New Jersey and help support the programs and services that benefit people with Epilepsy in New Jersey. Donations can be sent via check to National Walk for Epilepsy,8301 Professional Place, Landover, MD 20785. Please make sure to include Epilepsy Foundation of New Jersey in the memo line of your check.
The event registered nearly 5,000 people and to date over $900,000 has been raised. NJ ranked second place in the top fundraising teams and third place in the top team recruitment! Thank you to the teams that have designated their funds to the Epilepsy Foundation of NJ.
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Kids Speak Up Speak Out Conference a Success for EFNJ
Piggy backing the National Walk, Kids Speak Up! and the Public Policy Institute Conference took place April 21-23, 2013. Kids Speak Up! and the Public Policy Institute is the Foundation's centerpiece advocacy initiative. Every year we bring together over 250 advocates, including Epilepsy Foundation affiliate staff, parents, children, doctors and volunteers from across the nation. Through this initiative, we are able to strengthen our advocacy network, share updates on the state of epilepsy research & funding as well as give our families an opportunity to speak with Congress and share their stories of living with epilepsy. Topics at this years conference included: Medicaid, CDC & HRSA funding, and the MODRENN CURES Act.
To see highlights from the Hill this year please visit: http://www.epilepsyfoundation.org/getinvolved/advocacy/hightlightsfromthehill/index.cfm
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EFNJ Scholarship Program Celebrates 20 Years!
The Epilepsy Foundation of New Jersey is pleased to announce it is accepting applications for its scholarship program for New Jersey high school seniors who have epilepsy. We anticipate offering a least three $1,000 scholarships. The program was started in 1993.
New Jersey high school seniors with epilepsy who plan to attend a college or university are eligible. Academic achievement, participation in activities and financial need will be considered. The extent of a student's disability(s) will be taken into account as well, so that s/he need not be near the top of her/his class to qualify. Final awards will be made by the Epilepsy Foundation of New Jersey, which reserves the right not to make any awards.
Click here to print or download the 2013 Scholarship Application. Applications and supporting documents are due May 10, 2013. Please call 800.336.5843 or email [email protected] for more information.
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School Nurse Training Program
The School Nurse Training Program is a continuing education training program designed to provide the school nurse with information, strategies and resources that will enable him/her to better manage the student with seizures by: supporting positive treatment outcomes, maximizing educational and developmental opportunities, as well as ensuring a safe and supportive environment. Each training is 3.5 hours long and FREE for all school nurses. Nurses will receive 3.2 continuing education units after completing the training.
To schedule, contact Jenna Andolora to schedule 800.336.5843 or [email protected]
Click here to view our Spring/Summer training dates and locations.
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"Studio E" Art Therapy Program to be Held for 2nd Year in NJ
The Studio E Art Therapy Project will be held again for the second year. Studio E is an art therapy program that is sponsored by Lundbeck pharmaceuticals. Last year we held only one six part session session in Brick for teens. This year we will be holding that session and also another in Parsippany for adults, 18 and older, with Epilepsy. The sessions will be 3 hours once a week for 6 weeks. If you are interested in attending, please contact Jenna Andolora at [email protected] or 800.336.5843. Space is limited.
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Seniors and Seizures Program
The Seniors and Seizures training grant wrapped up at the end of February . EFNJ educated 115 individuals including directors, direct support professionals, nurses, and drivers at 8 facilities (2 of which we visited twice) in 6 counties. If you are interested in having your staff trained on recognizing seizures in the senior population, please contact Jenna Andolora at [email protected] or 800.336.5843
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Epilepsy Foundation Statement on the BRAIN Initiative
WASHINGTON, April 2, 2013 - The Epilepsy Foundation is excited epilepsy will be addressed as part of the new BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative. The goal of BRAIN, as announced by President Obama today, is to "help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer's disease, epilepsy, and traumatic brain injury." The initiative - launched with approximately $100 million in the President's Fiscal Year 2014 Budget - calls upon the private and scientific community to form partnerships to further this research. The White House Office of Science and Technology Policy (OSTP) also announced a goal last week to "work with all relevant stakeholders to consider how incentives could hasten the development of new prevention and treatment options for neurological diseases and disorders, and to recommend options for such incentives."
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Autism Tied to Valproate in Pregnancy
By Crystal Phend, Senior Staff Writer, MedPage Today
Published: April 23, 2013
Women who take valproate (Depacon) during pregnancy may increase the risk of childhood autism and its spectrum disorders in their children, a population-based study showed.
In utero exposure to the drug was associated with a five-fold elevated risk of autism and three-fold elevated risk for autism spectrum disorder, Jakob Christensen, PhD, of Denmark's Aarhus University Hospital, and colleagues found.
The absolute risks were 2.5% and 4.4%, respectively, and remained significantly elevated after adjustment for parents' epilepsy and psychiatric disease, the group reported in the April 24 issue of the Journal of the American Medical Association.
"For women of childbearing potential who use anti-epileptic medications, these findings must be balanced against the treatment benefits for women who require valproate for epilepsy control," they concluded.
continue reading
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Thank You To All of Our Supporters
Thanks to all the walkers at the recent National Walk for Epilepsy in Washington, DC who raised over $10,000 for EFNJ
Thanks to Kelly Pretz of Brielle, NJ whose jewelry making party raised $500 for EFNJ
Thanks to Colts Neck schools that raised $494
Thanks to Eric Miller of Pennington who continues to raise funds for EFNJ through his 50 concerts, so far he has raised over $2800
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