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EFVA December 2018 Newsletter

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DECEMBER 2018 NEWSLETTER 
EPILEPSY FOUNDATION OF VIRGINIA 
PROMOTE AWARENESS, PROVIDE ASSISTANCE 
WWW.EPILEPSYVA.COM
DONATE TO KEEP OUR PROGRAMS GOING!
Don't forget to like our Facebook Page and follow us on Twitter!
Fall and Winter Programs: 
OUTREACH TO HISPANIC FAITH BASED ORGANIZATIONS. 

RICHMOND: Regional Director Fernando Cordero provided information about the implementation of the Hispanic Outreach Program through Faith Based Organizations (FBO's). The project is progressing well and according to the schedule. 
 
Practically all the FBO's contacted responded positively and enthusiastically. They considered that an awareness program about epilepsy for the Hispanic community was very important because education and information on that specific topic would help to empower people and allow them to make good decisions. 
 
The first awareness session was held at the Church of the Epiphany on November 25. All the participants agreed that the awareness session gave them valuable information and ideas about epilepsy and on how to proceed in case  they have to assist a person who is having a seizure. Most importantly, they recognized that before the awareness session they had a very wrong idea about epilepsy. They also said that they will share the information received about epilepsy with family members and friends.

The next awareness session was held Sunday, December 16 at the St. Augustine Church. This church serves the largest Hispanic community in Richmond. Based on the number of participants, it is likely that we will need to have two separate sessions.
 
The pastors in both churches informed their congregations about the awareness sessions in each of the religious services two weeks in advance of the sessions. Furthermore, the two churches included an article about the awareness sessions in their respective weekly bulletins. 
 
St. Patrick, St. John and the Sacred Heart churches would like to have an awareness session in their respective churches as well. 


Picuterd above: Father Marlon Portillo worked with
Fernando to educate perons about epilepsy. 

The Epilepsy Foundation of Virginia was established in 1978 to promote awareness about epilepsy and provide assistance to those with the disorder. EFVA has served over 50,000 clients with epilepsy and trained over 100,000 professionals on how to deal with epilepsy. Last fiscal year EFVA’s combined programs reached more than 3 million Virginians.

Nice article about EFVA in National Epilepsy Foundation Newsletter.
Local Foundation Spotlight: Epilepsy Foundation of Virginia
Tuesday, December 18th

This month, we are shining our spotlight on the Epilepsy Foundation of Virginia (EFVA) and their HOBSCOTCH (Home Based Self-Management & Cognitive Training Changes Lives) program. This program helps change lives by helping adults with epilepsy who have memory problems.

What is HOBSCOTCH?

HOBSCOTCH is a behavioral, self-management program to help adults with epilepsy with memory and attention problems. The program consists of 8 sessions and provides problem-solving skills to help participants work through memory-related difficulties and other problems. The program is provided by trained memory coaches. HOBSCOTCH is affiliated with the Dartmouth-Hitchock Epilepsy Center and is funded by the Centers for Disease Control and Prevention.

HOBSCOTCH at EFVA

This fall, 13 participants signed up for HOBSCOTCH with EFVA and 60% finished or are still in the program. Participants who took both quality of life surveys showed an increase in their quality of life scores. (HOBSCOTCH measures quality of life with the Quality of Life Epilepsy Scale.)

  

EFVA was able to provide this program with support from students from universities in the Virginia and Washington, D.C. area. To the right is a picture of the students surrounding Suzanne. They are: Miriam, Helina, Kevin, Ruchelle and Rand.  

To find out if HOBSCOTCH or other self-management programs are available in your area, contact your local Epilepsy Foundation.

More about EFVA

In recent years, EFVA has trained 235 school nurses and 232 senior caregivers through Epilepsy Foundation national programs. EFVA also provides trainings to day care centers and police. Other programs include: To contact EFVA about any of these programs, call 434-924-8669 or at SRB3M@virginia.edu.
Thanks for the mention!
INCIDENT on FLIGHT

As the holiday travel season is upon us, the Epilepsy Foundation encourages everyone to plan in advance to manage seizures while traveling. Depending on the seizure type, preparing for travel may include the following:

  • Discuss your travel plans with your doctor or EFVA to get any relevant medical advice and recommended precautions.
  • Take your seizure response plan for travel and share it with transportation personnel if you are traveling alone.
  • Speak with your doctor about adjusting dosage times for medications in different time zones.
  • Depending on the type of travel and the length of your trip, you may need a note from your doctor about carrying medicines with you. It is important to have all your daily seizure medications and any prescribed rescue medications with you and readily available during your flight, train, boat or bus travel.
  • Know the regulations for transporting medications (particularly when bringing liquid formulations on a plane). A TSA pre-check may save time and hassle. 
  • Share your seizure response plan with those who are traveling with you, and make it accessible to others by carrying a copy with you (paper or digital).
  • Make plans in advance to avoid disruption in sleep schedules. If you know it is impossible for you to rest on a plane, avoid long, overnight flights. Or speak with your doctor about a sleep medication to help you get enough rest while you travel.
  • If you are traveling overseas include in your planning the identification of a clinic or hospital where you can find help if needed during your stay.
  • Prepare ahead with the appropriate insurance in case you need medical care while traveling.

Can bracelet help for psychogenic non-epilepsy events? 
Could wearing a bracelet or necklace indicating that someone has psychogenic non-epileptic events (PNEE) (also known as psychogenic non-epiletpic seizures, PNES) prevent unnecessary treatment, complications and costs?

In order for it to work safely, at least the following criteria would need to be met prior to considering wearing a bracelet:

  • A diagnosis of PNEE must be confirmed by EEG-video monitoring or an experienced epilepsy center.
  • Epilepsy seizures need to be confidently ruled out.
  • Bracelet should be accompanied by some form of information to instruct responders what to do in the event of a “seizure.”
  • Based on the above, the physician and health care team must still exercise their clinical judgement in deciding how to treat seizure activity in this individual.

In the end, this bracelet is not intended to ward off medical attention or discourage people from seeking effective psychiatric treatment. Rather, it should serve to avoid repeated costly and potentially harmful interventions, such as imaging (CT, MRI), IV, intubation, etc. Thanks goes to the national  Epilepsy Foundation for this article. 

UCB Family Epilepsy Scholarship Program

UCB is currently accepting applications for its Family Epilepsy Scholarship ProgramTM. Celebrating 12 years of service, the program helps people living with epilepsy, their family members, and caregivers who are pursuing higher education.

  • 30 applicants will receive scholarships up to $5,000 for demonstrating academic and personal achievement.
  • 2 applicants will receive Epilepsy Leadership Scholarships worth up to $10,000. Winners must demonstrate personal and academic achievement, a passion for advocacy, service to the epilepsy community, and a persevering spirit. This prestigious award honors two leaders in the field who passed away in 2016: Sandra Helmers MD, MPH, and John M. Pellock MD.

A panel of medical professionals and patient advocates will select the scholarship winners.

Questions?

LATEST BOOKS ON EPILEPSY HEROES. 

An epilepsy mother asked if the EFVA would discuss the books about epilepsy heroes, which recently came to our attention. We are glad to oblige.

A Mind Unraveled (2018) is a most gripping book by Kurt Eichenwald, an award winning journalist, about his dreadful experiences related to his seizures. Not being able to put down the book, I learned how Eichenwald slowly overcame dangerous treatments and false diagnoses by people who were not experts in epilepsy. In his steps he:

  1. stops his own denial,
  2. seeks the help of his college roommates and explains epilepsy to them,
  3. allows his mother to step out of his father's shadow and advocate fohim,
  4. finds an epileptologist who knows what he is doing, and
  5. succesfully fights the efforts by his university to remove him and graduates to become a journalist, who is also a husband and father. 

Eichenwald also discovers a curious upside: After a convulsion, his college English papers go from being disastrous (“Your writing is grotesque” is the comment his first paper receives) to being “A”-worthy work, composed with “top-notch” vocabulary and perfect sentence structure. Although he isn’t clear what the connection to his seizures is, he wonders whether the convulsions trigger a smarter, clearer part of his brain

James Madison (2014) by Lynne Cheney is about our founding father who doubled the size of the United States by managing the Lousiana purchase and  was instrumental in shaping the Constitution. He was friends with ohter Virginia founding fathers who offered him rest after he had had several of his episodes (epilepsy).  

The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (1998) by Anna Fadiman. The title speaks for itself.

We also have our own Virginia epilepsy heroes who wrote books. We shall be happy to provide anyone with their email addresses.

For epilepsy fiction please google "goodreads epilepsy." For professional information, go to epilepsy.com. 

DIRECT ASSISTANCE IN EASTERN VIRGINIA
We are so happy to have restarted our direct financial assistance program in Eastern Virginia. Marge received a bracelet and Shellene Grimes received help to buy a bicycle and a helmet. Do you need help? Please contact srb3m@virginia.edu
 
Major Donors: November
Edwards family $ 5000.00
ELKTON 's Cider Slider will be combined with HOBSCOTCH CELEBRATIONS.
Thank you regional director Gina, for allowing us to participate. 
January 19, 2019
Cider Slider 5k

Trail Run/Walk

Prizes for Top 3 Male & Female finishers. Come run or walk for a great cause on the beautiful Elk Run Trails located behind the Elkton Community Center. Our 3rd Annual Cider Slider 5k race will begin promptly at 11:00 AM, with hot apple cider and chili after the race. All participants will receive swag bags too!

REGISTER FOR EVENTS by following guidelines on our calendar.
Go to www.epilepsyva.com/calendar for more information. 
Interested in EFVA Financial Documents?
560 Ray C. Hunt Drive
P.O. Box 800754 - UVA Medical Center

 Charlottesville, VA 22903

 
DONATE year end donations very welcome.