Newsletters

EFVA March 2019 Newsletter

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MARCH 2019 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 
and Instagram!
NEW PROGRAMS FOR EPILEPSY HEROES IN VIRGINIA:

HOBSCOTCH MEMORY PROGRAM

Thanks to the national office and the Centers of Disease Control, EFVA received seed money to try a new memory program, where a baseline Quality of Life was measured and compared to results after the program.  The results were impressive: Mean QOLIE-31 overall score went from 59.1 pre-program to 65.26 post-program (a 3.6% increase). 17 % of participants had reduction in QOLIE-31 scores.  One participant had an increase of 10 points on the cognitive subscale of the QOLIE-31.

Satisfaction Survey.
100% of those, who finished the course, agreed that, as a result of doing HOBSCOTCH, they have developed new skills that they plan to better manage their daily memory problems.
100% agreed that, as a result of the program, they feel more confident about their ability to cope with memory problems.
  
At the time EFVA applied for the grant, we hoped this course would help us help assist epilepsy heroes in their jobs, as EFVA advocates with employers to keep epilepsy heroes on their jobs. At the conclusion of the grant period we concluded that the program does not seem to be geared for working heroes.

The good news is that the Charlottesville office secured a major grant to

  1. Train more HOBSCOTCH memory coaches, and
  2. To hire an occupational therapist to design a program, which is shorter and helps epilepsy heroes in the workplace. 
Lowell Evans, Consumer Services Representative and Epilepsy Hero in South Hampton Roads participated in HOBSCOTCH. We hope he will become a memory coach!
CIDER SLIDER 5K
Pictured above are some photos from the Cider Slider 5K organized by NOVA NW regional director Gina Washington. This event, originally scheduled for January 19, had to be moved to January 26 due to weather.  Even so, there was a wonderful turnout on a brisk Saturday.

The event was held at the Elkton Area Community Center in Elkton, VA.  The 5K run/walk incorporated trails behind the community center and that ran along Elk Run.  After everyone finished, we enjoyed homemade chili, provided by Gina with all the fixings!  Those that participated were also eligible for a raffle drawing which saw many gifts provided by local merchants. 

We also gave out HOBSCOTCH certificates. Lisa Speet (pictured below), who had just finished her HOBSCOTCH  course received her certificate directly from Executive Director Bischoff.  All in all, a great awareness event. 

Thisbe and Noah Scott Foundation Travel Grant

Conference Grants

Family conferences exist to allow families to come together and create a community around their child’s disease. New and valuable information can come from these conferences that give families a better understanding of the disease, which can result in enhanced clinical care or possibly even a new direction in research.  These families need to know they are not alone; they need hope.

Applications are now being accepted for families who would like to attend a 2019 family conference for their child’s neurological disorder. Family is defined as these immediate members: mother, father, guardian/primary care provider and siblings.  Application deadline is March 18 and all applications will be responded to on or before March 31. Please contact Lindsay Ballew at lballew@thisbeandnoah.org with any questions.

If awarded grant:

  • The maximum amount awarded to a family driving to a conference is $800. 
  • The maximum amount awarded to a family flying to a conference is $1400.
  • All receipts for the conference must be submitted in one file at one time to lballew@thisbeandnoah.org.  You will be reimbursed within 3 weeks of our receiving your receipts and proof of conference registration and/or attendance. 
  • Photo Release Agreement and Reimbursement Agreement must be signed and returned within 7 days, in one file, once you have been notified that you will be receiving the conference grant.  

If chosen, we ask that each attending family complete a survey after the conference. 

Please follow @thisbeandnoah on Instagram and @thisbeandnoahscottfoundation on Facebook.

To apply, go to www.thisbeandnoah.org  The application form should be found under the 'Support' tab.  

Charlottesville Fitness Walks for epilepsy heroes, started January:
 

Charlottesville fitness walks for epilepsy heroes started January 10. We copied NOVA NW Gina Washington's program. Todd Patrick is leading the walks in Charlottesville on the second Thursday of each month, through March, depending on the weather. This photo is of those that participated in the February walk. Eastern Virginia CSR Lowell Evans is planning fitness walks for March. For more info go to epilepsyva.com/calendar.
SEIZURES ARE A DRAG
Mark your calendars for the annual "Seizures are a Drag" event happening on March 24.  The festivities start at 6 PM with a social hour, and the show begins at 7.  This fun event is sponsored by the AGLA and the Imperial Court of Washington D.C. 

This year's event will take place at:
 Freddie's Beach Bar, located at 555 South 23rd Street,
Arlington, Virginia 22202


If you need directions, or parking information,
call Freddie's at (703)-685-0555.
A $10 donation is suggested at the door. 

This event is sure to be a blast!!  You never know who might show up in drag!
SOUTH HAMPTON ROADS FITNESS WALKS
EFVA's East Coast Representative Lowell Evans starts fitness walks for epilepsy heroes in March on the 2nd and 5th Saturdays of the month at 2:00pm at Mt.Trashmore. For more info please call (757)-226-8408.

Thank you Lowell for doing this for South Hampton Roads epilepsy heroes!
AWARENESS PROGRAMS AT RICHMOND AREA FAITH BASED ORGANIZATIONS

Our Richmond office has been busy!  In November and December of 2018, Regional Director Fernando Cordero conducted two (2) large epilepsy awareness events to the Hispanic population of the city of Richmond, and the counties of Henrico and Chesterfield.  The awareness programs were conducted through local faith-based organizations, and were made possible by a grant from the Epilepsy Foundation of America.

The results of the awareness programs were fantastic!  Almost 750 people attended the 2 events, and all of the participants acknowledged that they learned a tremendous amount about epilepsy.  Prior to the awareness sessions, many of those in attendance had incorrect ideas about epilepsy.  They included: many associated seizures with death; more than half were afraid of revealing that a family member has epilepsy; many believed that people with epilepsy are dangerous to others; over 30% believed that people with epilepsy could not hold a job; 9% believed that people with epilepsy are not intelligent or have any spiritual faith, that epilepsy is contagious and that epilepsy is related to one’s sins or an evil spirit. With regard to treatment, 30% believe in herbal remedies and 6% believe that a spiritual healer or exorcism is the best way to get healed. At the conclusion of the awareness sessions, those misconceptions were replaced with scientific and medical reality.
Fernando did a great job and deserves many thanks.  He contacted 10 faith-based organizations and had positive responses from 6.  However, due to the holidays only 2 were able to host the awareness programs. 

EFVA is most appreciative to the spiritual leaders that the churches of Epiphany Church and St. Augustine Church for opening their doors, and arms, to allow us to conduct these awareness programs.  And stay tuned, Sacred Heart Church, St. Patrick Church and St. John Church have all expressed interest in hosting awareness programs in 2019.  Looks like Fernando is going to be busy!

Major Donors: February
The G Foundation $54,829.00
Nelson County Community Fund at the
Charlottesville Area Community Foundation $4000.00
Morgan Stanley $1000.00
2019 TOUR de MIDNIGHT BIKE RIDE
The planning for the 2019 Tour de Midnight bike ride has begun! The planning for this event begins almost the day after the last ride has been completed!  The planning meetings, lead by our incredible husband & wife team of Dennis and Missy Terry, have been well attended and very energetic.  Some pretty neat ideas have been discussed about team competition, and how to handle those really impressive items that get donated to raise money for the EFVA.
 
A block of rooms has already been set aside for riders and their families at the Marriott in Short Pump. And the committee is working on securing more rooms at local hotels.  So those of you who have already registered for the 2019 Tour de Midnight can now reserve your room(s).  And for those of you who haven't registered, get to it!  There is still time to get a discounted registration fee, but not for long!  And the VIP registrations are going fast, with only left for the 50K, and only left for the 100K!

So register now at www.bikereg.com/tourdemidnight
2019 DAY CARE CENTER TRAINING IN RICHMOND
 


Seizure and Diastat training that took place at the Youth and Family Services of Virginia (YFSVA) on January 15. The Youth and Family Services of Virginia is a private institution that takes care of children with disabilities, including epilepsy. Fifty staff members were trained and most likely EFVA will have to do more training sessions because the institution has 250 staff members working with children. 
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.