Newsletters

EFVA June 2019 Newsletter

*|MC:SUBJECT|*
 
JUNE 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!
EPILEPSY ACTIVISM  
NATIONWIDE AND IN VIRGINIA

SPECIAL ANTI-CONVULSANTS PROTECTED IN MEDICARE

Happy epilepsy heroes.

The Epilepsy Foundation applauds the Administration for pulling back harmful provisions proposed last November that would have impeded access to life-changing, oftentimes life-saving, anti-convulsants for the 1.1 million Medicare beneficiaries living with epilepsy. In the finalized Medicare Part D rule released Thursday, the Centers for Medicare & Medicaid Services (CMS) codified the existing Medicare Six Protected Classes policy — affirming the policy's importance for people with complex acute and chronic health conditions.

CMS established the Six Protected Classes policy to ensure that Medicare Part D beneficiaries living with serious and complex health care needs — such as epilepsy, HIV, mental illness, cancer, and organ transplants — have meaningful and timely access to the full range of approved medications necessary to manage their conditions and maintain their quality of life. Since November 2018, when the proposed rule to weaken the Six Protected Classes Policy was published, the Foundation engaged in a multi-faceted advocacy campaign to educate the public, lawmakers, and members of the Administration about the importance of preserving the original intent of the policy. 

Coordinated by the National Epilepsy Foundation, epilepsy advocates took action by submitting more than 870 comments to the Department of Health and Human Services on the proposed rule and by sending 3,671 letters to their U.S. Representatives and Senators asking Congress to help stop the rule. Together, these actions helped the Administration understand the importance of the Six Protected Classes policy.

Epilepsy Training for 
Camp Counselors

Camp Holiday Trails (CHT) and the Epilepsy Foundation of Virginia (EFVA) organized an epilepsy awareness training session for the CHT counselors. 

EFVA has learned from research that a well designed camp for children with epilepsy can improve adaptive behaviors and social interactions. Overall net gains appear to increase over time, suggesting additional benefits for return campers. Pediatric Neurologist Dr. Heinan graciously volunteered her time to train the camp counselors on how to treat children with epilepsy. EFVA also donated funds to CHT to help establish stipends for young epilepsy heroes. The camp is available for children 7-17 and the sessions are:

Session 1: June 16–June 21, 2019
Session 2: June 23–July 5, 2019
Session 3: July 14–July 26, 2019
 For more information, please go to epilepsyva.com/calendar

SIX HUNDRED FAIRFAX POLICE OFFICERS TRAINED

Following a request from a young individual who felt wrongly arrested during a seizure, EFVA offered the Fairfax Police Department a training session they could use in their morning briefings. 

The trainers in the police department were appreciative about accessing the online video explaining different aspects concerning epilepsy.  They felt the video worked well with their shift meeting. EFVA hopes this is another step towards making the world more epilepsy friendly

FITNESS WALKS & PICNICS 
FOR EPILEPSY HEROES

Fitness walks for epilepsy heroes are continuing. Lowell Evans leads the Tidewater walks at Mount Trashmore, and staff of the main office in Charlottesville lead walks starting in the parking lot of 560 Ray C. Hunt Drive.  In Northern Virginia, NOVA Regional Director Gina Washington organizes many walks, and also held a picnic in Lorton.

Lorton picnic
Charlottesville
EFVA started these walks as a result of studies about epilepsy and exercise.  
Some of those findings were:
  • Seizures are rarely triggered by exercise.
  • Aerobic exercise seems to be safe for most people with epilepsy (PWE)...
  • Persons with controlled epilepsy should be stimulated to exercise.
  • Scuba and skydiving are generally not recommended for PWE; Other risk sports are recommended with the necessary precautions.
  • Physical exercise should be encouraged as a complementary therapy to improve comorbidities in PWE. For more information, go to epilepsyva.com/calendar.
EFVA BOARD MAKES
BOLD DECISIONS

At the EFVA Annual Board meeting, held on June 15, 2019, the EFVA Board made many important decisions. One of the most important was the decision for EFVA to help pass a law in Virginia in which all school nurses, and other school personnel who interact regularly with students with epilepsy, are educated about epilepsy and know epilepsy first aid.

Our representative in Richmond, Regional Director Fernando Cordero, is already making preparations for this campaign. Thank you Board for all that you do. 

Major Donors: May & June
EISAI $10,500
National Epilepsy Foundation $5,750
SUNOVION $3,000
Captain (USN-ret) R.A. Laraway $2,500
Louisa County Community Fund $2,500
2019 TOUR de MIDNIGHT BIKE RIDE
The planning for the 2019 Tour de Midnight Bike Ride is in full swing! 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.

So register now at www.bikereg.com/tourdemidnight or pledge at pledgereg.org
SUPPORT GROUPS STILL MEET AROUND OUR COMMONWEALTH
For more information, please visit epilepsy.com/calendar
QUESTIONS ABOUT LASER ABLATION
FOR EPILEPSY
EFVA has received several questions about laser ablations for epilepsy. Studies are ongoing and we shall inform all the heroes when we know more. As many as 25% -30% of epilepsy heroes still suffer uncontrolled seizures, and we cherish new therapies, as our goal is to end epilepsy.  

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.