Newsletters

EFVA July 2018 Newsletter

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NEWSLETTER
July 2018
PROMOTE AWARENESS, PROVIDE ASSISTANCE 
WWW.EPILEPSYVA.COM

EPILEPSY FOUNDATION OF VIRGINIA 
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Dash and Splash Success!!!
Dash and Splash - Top 3 male and female finishers, July 7, 2018
On July 7th, EFVA had a successful 3rd Annual Fireball Dash and Splash thanks to the coordination of Northern Virginia regional director, Gina Washington. This year, we had 110 participants. This mile run and mile river ordeal included large groups, many kids, and participants from the community. Our youngest participant was three (accompanied by parent) and our oldest participant was 68. Some parents held on to their younger children’s tubes the entire course of the way, while others tied their tubes together. Dash and splash fun for everyone! 
 
At 8:30 am, was the first check-in, where every participant got a BIB number on arm and leg in permanent ink. This is important to stay visible for entering the river portion of the course. After gathering everyone for a few speeches, the race started. The second check-in point was after the mile run. This is where everyone received their PFDs (personal flotation devices) and got ready to tube down the river. Finally, there was a third check-in point after leaving the river to make sure everyone has gone through and finished the race. Everyone but two people made it to the finish line. Thankfully, Swiftwater Rescue was there to help them get out of the water -- one was tired and another felt an aura and made the wise decision to get pulled out, instead of potentially having a seizure in the water. Safety is always a priority and we are glad to say that all participants were safe. 
 
This is all thanks to our amazing helpers. Swiftwater Rescue, Elkton Fire Department, Elkton Rescue Squad and Rockingham County Fire Department were key players in being watchful eyes. Swiftwater rescue had 5 canoes along the mile-long river portion of this event, with one at the beginning, two in the middle, one going back and forth upstream and downstream checking on everyone, and one in the end guiding everyone back to land. Swiftwater Rescue also has 3 “catchers” at the end of the race as the last leg of the Mighty Shenandoah is swift. We find that some have a hard time paddling themselves over to the exit off the river on the right. SWR is there to throw out rope Bouie’s for those caught in the current and pull them safely to the exit area. 
 
The day before the race, Gina Washington and her daughter, Trish, completed a wet-dry run to test out the area. They noticed that due to some rain the previous week, they had a low river and a lot of ripples. This run was important in giving participants pointers to the river and rocks, especially where to lift their tails! Kudos to Gina and Trish who started planning for this event starting December 2017 and met with the community regularly to promote. Their utmost dedication to EFVA and this event are not taken lightly. 
 
In the end, Gina Washington gave out prizes to the top three male and female finishers: Patrick Stapleton, Paul Bunker, Kevin Writt were the Male Top 3. Female Top 3 went to: Lauren Childress, Jocelyn Chan and Shana Robertson. The oldest participant Joseph Kanipe, groupie of the year award: Erick Sorcelli, and last one to enter the river (underdog award): Shaun Sloan. 
 
Next year, Gina plans for even greater success and estimates to have over 300 participants. She also plans to add a changing station after the river, partnerships, food vendors, music, and more. We thank all of the volunteers and community for supporting epilepsy with great passion.                                                    
Elkton Eye Care Team, 40 participants (top left); Massanutten Resort Team, 15 participants (top right); Start of the Dash and Splash race (bottom)
Check out EFVA's Facebook page for more photos of Dash and Splash.... 
Welcome to the team, Anita! Thank you for your work, Kay. 
We welcome long-time EFVA board member, Anita Mays (left), as our new Southwest and Richmond Virginia regional director. We thank Kay Hornsby (right) for dedicating 5 years to EFVA as Southwest Virginia EFVA regional director. She had extremely succesful walks and for years, helped out many clients. Kay was a wonderful part of EFVA and she has surely made her mark. Kay, you will be missed!

Words from Kay Hornsby 
"Being a regional director, with the Epilepsy Foundation of Virginia, for the past five years, was one of the most rewarding times in my life.  It was an honor and privilege to work with some amazing people, and meet equally, amazing clients.  My area included Lynchburg, Roanoke, Franklin County and parts of southwest Virginia.  My support groups were such wonderful individuals, who stepped up to help me, reach others.  I will truly miss seeing them on a regular basis.  Thank you to them, for their kindness and positive encouragement to me.  I plan to still be involved with the EFVA behind the scenes, helping and supporting the new regional director, Anita Mays.  Thank you, Dr. Suzanne Bischoff, for the opportunity you gave me, as a regional director." - Kay Hornsby 

Anita Mays: 15 years as volunteer, 10 years as board member, and now regional director. 
Anita first got involved with EFVA when son Matthew was diagnosed with epilepsy at the age of two. EFVA gave her information, support, and resources. This helped her understand different options, possible outcomes, and how to ask the right questions to their infamous epileptologist, Dr. Dreifuss, who greatly impacted the world of epilepsy right in our home of Charlottesville, VA. Anita found a community and connected to others who were going through the same ordinances of epilepsy. Due to the great help of EFVA, Anita and her son beame dedicated volunteers and eventually members of the board of directors. She has also been a part of EFVA’s Virginia Network, a community of volunteers dedicated to guide those affected by epilepsy for support, whether newly diagnosed or not. Anita is familiar with the struggles we encounter, from diagnosis to maintenance. She values the time of being able to talk with parents or clients because it is a journey shared together. Anita gladly took this opportunity to work as regional director to support others to even greater lengths.

As a new regional director, Anita hopes to build on Kay Hornsby’s many successes, including awareness strolls in Lynchburg, strong support groups in Franklin County, Roanoke, and Richmond. Anita is also heading the Charlottesville and Lynchburg Strolls this year, after being a dedicated participant and volunteer for many years. She says that there is a lot of positive support for these strolls, from the great venues, dedicated volunteers, generous Pharma reps, willing to perform bands, and entirety of the community.

Anita is weary about continuing Kay’s strong legacy, but we know that she will do a fantastic job. Executive director, Suzanne Bischoff’s supportive team of regional directors are here to help and have told Anita, ‘If you need anything, let us know’. To the community, Anita says: “Don’t be afraid to call.” She is happy to be a resource for anyone who needs assistance, and wants you to know that “you are never alone.”

Epilepsy Hero Spotlights
Emma Cecil, Epilepsy Hero 
Nearly nine years ago, I was given the most beautiful new lease on life.  I was just fifteen; awkward, but full of an inexplicable hunger to fill this disoriented world with gratitude.  Thankful just to be alive.  Fulfilled in knowing there was a reason. 

I took control and I ran with it.  I never left boarding school and I didn’t quit playing sports. I enrolled in more difficult classes.  I learned that stringing the words, “I have epilepsy,” together, was more difficult than I thought.  And that crying doesn’t make you weak. 

However, there were growing pains in the transition toward adaptation.

My hands shook every morning and I threw up from my medicine. I had to adjust my diet and learn my seizure triggers.  I lost my ability to walk and talk and spent three months (on and off) in intensive care.  I spent senior week in the hospital, and prom at home. 

One week after I learned to walk, I attended my first college softball practice.
A week after that I sat in my first college class.
I held two softball fundraisers for epilepsy.
I ran two 5Ks.
I stayed in school and I transferred to a larger school when my body was ready.
I got my nose pierced.
I joined a sorority.
I shared my story.
I went on a cruise with my best friends.
I cut my hair off and dyed it blue, then purple, then pink.
I attended a music festival in New York City.
I’ve lived for myself.  I’ve done most everything I’m afraid of and conquered it all.
I’m proud.
Epilepsy doesn’t hold me back, it’s pushed me forward.  I now know what it means to live life to the fullest; unafraid.  
Because of it, I have found Me.

- Emma Cecil

Emma Cecil attends West Virginia University with a major in Communications and a minor in Fashion Merchandising. She lives with epilepsy, but it has not stopped her from pursuing her dreams.
Kyle Sandlin, Epilepsy Hero
11 years. That is how many years I have been diagnosed with epilepsy. Even though to the average adult that does not seem like the longest time, it has covered more than half of my life and does not seem to be going away anytime soon. When I was first diagnosed with epilepsy I felt very alone and with the help of my neurologists and the medical stuff at Children's outpatient in Fairfax, VA we a created a support group. Its name is called the Haywire Club. My goal was to make sure that no child in the group felt as I did. Someone in the club recommended to me that I should apply to the UCB epilepsy scholarship. When I was told that not only had I won a scholarship but, won a $10,0000.00 award that only two people out of the thousands of applicants receive; I was and am beyond grateful for. This scholarship only brightens the fire inside of me to reach out to as many children diagnosed with epilepsy. I hope I can make a difference in the future.  - Kyle Sandlin

Kyle Sandlin is a 20-year-old college student living with epilepsy. He is a Cybersecurity major at Northern Virginia Community College and plans to transfer to George Washington University in the near future.
Lower pocket costs of medication: response to President’s Blueprint

There was a Request for Information (RFI) to address proposals contained in the President’s blueprint to lower drug prices and reduce out-of-pocket costs. EFVA added comments to the proposal.

We encourage you to read about the I Am Essential coalition’s comment letter.The "I Am Essential" coalition has prepared draft comments for organizational sign-on in response to the President's Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. The comments focus on proposals contained in the Request for Information (RFI) that address efforts to reduce patient cost-sharing in qualified health plans. The letter outlines proposals the Administration could take to lower patient cost-sharing; many of which I Am Essential has commented on in the past. Patients with serious and chronic health conditions often shoulder the heaviest cost burden and are faced with high out-of-pocket costs, such as increased premiums, higher deductibles, rising copays and co-insurance. All of which can have an impact on medication abandonment and adherence.

Click here to see document.

SUDEP

July 12, 2018 was Virginia's National SUDEP Awareness Day. Do you know about SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy patients. It is the sudden and unexpected non-traumatic or non-drowning related death in a person with epilepsy. Each year, about 1 out of 1,000 adults and 1 out of 4,500 children with epilepsy die from SUDEP. 

No one is sure about the cause of death in SUDEP, but it is recommended that patients attempt to control their seizures as much as possible. Some researchers think that a seizure can cause an irregular hearth rhythm, while other studies suggest suffocation from impaired breathing, fluid in the lungs, or being face down on bedding. Others have faced cardiac arrest. These can be avoided as much as possible with aiming for zero seizures with medication and alternative therapies. 

We thank our donor, the G. Foundation for their support in raising SUDEP Awareness. This year, we have been able to train doctors on SUDEP Awareness and the importance of informing patients of the risks. Families of SUDEP warriors have said that they wished they were informed of the possibilities. We urge you to get informed, ask questions, and lead healthy lives to reduce seizures as much as possible. 

Tour de Midnight
Missy and Dennis Terry  are promoting the Tour de Midnight at many events around the Commonwealth. Thank you both! Link to its Facebook page here
Major Donors: July
The G. Foundation: SUDEP education $ 21,340.00 
Walmart: Walks  $10,500.00
UCB: Tour de Midnight $ 6500.00
National Epilepsy Foundation:  $4000.00 
Bailey Printing Cville walk $ 1250.00
LivaNova use a helmet $ 1000.00
The Virginia Epilepsy Community
thanks you for all your help!

 
Upcoming Events
REGISTER FOR EVENTS by following guidelines on our calendar epilepsyva.com/calendar: 


Tour de Midnight - October 13th ( https://www.bikereg.com/36769 )
Charlottesville Walk - November 4th
For information about bike ride, walks, and other events go to www.epilepsyva.com/calendar
Interested in EFVA Financial Documents?
Follow these links:
560 Ray C. Hunt Drive
P.O. Box 800754 - UVA Medical Center

 Charlottesville, VA 22903

 
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