March/April 2021

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“The greatest glory in living lies not in never falling, but in rising every time we fall." - Nelson Mandela

Epilepsy Services of Southwest Florida  

Bi-Monthly Newsletter
Seventh Edition
March/April 2021

 

Greeting to our clients, physicians, donors, sponsors, supporters, and community members! 

We are still faced with many of the challenges we experienced in 2020.  The COVID-19 virus is still evident and we hope that all of us will be able to get the vaccine as soon as possible.    

We are looking forward to where we can all eventually come together again and continue on a path to a healthy, safe and prosperous life. 

Epilepsy Services of Southwest Florida always puts the health, safety, and well-being of our clients, employees and stakeholders first.

We are following the recommendations of the local and national authorities and are abundantly concerned for all members of our community. 

We have decided to temporarily suspend office visits, events and in-person support groups until further notice due to COVID-19. 

We are working remotely and are available via email or phone.

All client clinic visits with their physician will be coordinated from our offices.

These visits will be scheduled by your Case Manager and they will contact you regarding your appointment.

 

Please call the following numbers or email to connect with your Case Manager:

Fort Myers Office (also serves Naples)
Bobbi Frasca; (239) 265-6865,email bfrasca@esswfl.org
or Gwendolyn Howerton; (239) 275-4838 ext.2, email ghowerton@esswfl.org

Sarasota office, Rebeca Elton:  
(941) 953-5988, ext. 312, email relton@esswfl.org

Sarasota & Bradenton office,
Diane Walz: (941) 752-6226; email dwalz@esswfl.org

Other inquiries:
Executive Director, Kevin Lindberg: (941) 953-5988, ext. 303, email klindberg@esswfl.org

Prevention & Education information,
Community Outreach Coordinator, Barbara Coleman:
(941) 953-5988, ext. 316, email bcoleman@esswfl.org

In the event of an emergency, please call 911, as Epilepsy Services of Southwest Florida is not an emergency service organization. 

Our staff hopes you and your loved ones stay healthy and safe during this difficult time.


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DATE TO REMEMBER!
MARCH 26, 2021 IS PURPLE DAY! 

Celebrated annually on March 26th, Purple Day is a day that is dedicated to bringing awareness to the world about epilepsy. From its humble beginnings in 2008, Purple Day began as a grassroots effort and is now celebrated all over the planet, on every single continent – even Antarctica.  Today, it is celebrated by everyone from the guy next door to major celebrities and is celebrated simply by wearing the color purple.

The idea of Purple Day was initially conceived by Cassidy Megan of Nova Scotia, Canada in 2008. As a person who struggled with epilepsy, she wanted to get people talking about it to not only let those who struggle with it know they aren’t alone but to help dispel some of the myths surrounding epilepsy. Later that year, The Epilepsy Association of Nova Scotia decided to help promote her idea of a day for epilepsy, therefore, Purple Day was born.

A year later, in 2009, the idea was picked up by the Anita Kaufmann Foundation and in a joint effort with The Epilepsy Association of Nova Scotia, launched Purple Day on the international stage. This led many other organizations – such as schools, businesses, and other agencies – to also celebrate the holiday.

Purple Day Customs & Traditions

Purple Day can be celebrated in a number of different ways. One way is to wear purple and let people know why you are wearing purple. Other ways include attending events that happen all over the world on this day, using the social media tags #purpleday, donating your Facebook status to the day, asking your local politicians to wear purple on this day and asking local businesses to get involved.

However, one of the most important ways to get involved with Purple Day is by making a donation to your local epilepsy organization. These agencies are not only working hard to find solutions to epilepsy but to also improve the lives of those who suffer with it.

Your Donation Will Make a Difference

Please click on the button below to donate through the Flanzer Matching Gift Program and double your donation!  Select Epilepsy Services of SWFL in the drop down option at the bottom of the page to ensure your donation is sent to our organization.  We sincerely appreciate your support! 


 

 

Community Day 2020: Watch Now

Organized by, and for, people affected by epilepsy, the Epilepsy Foundation held the 2020 Community Day virtually on August 29, 2020. Watch the full day of sessions to learn about what’s new in epilepsy treatments, genetics and other topics.

Topics covered included:

  • Telemedicine: How We Got Here and What’s Next
  • Genetic testing and epilepsy
  • Sudden unexpected death in epilepsy (SUDEP)
  • Cannabidiol and making informed choices
  • Getting involved and making change in your community
  • And more.....

Epilepsy Services Seeks Volunteer Board Members

Are you looking for a unique volunteer leadership opportunity?  If you are committed to helping people who have epilepsy and no healthcare options, we are looking for you!

Epilepsy Services of Southwest Florida is looking for leaders like you to join our board of directors.  Since 1967 our program has ensured that our work for uninsured adults with epilepsy pays off with outcomes that include a reduction in seizures, fewer trips to the emergency room and an overall improvement in quality life.   Support of our program is an excellent investment and worthy of public support.

If you are one or more of the following, we would like to talk to you:

  • Energetic and entrepreneurial business people who are not already overextended with other commitments, eager to put their enthusiasm toward improving our programs
  • Community leaders and philanthropists willing to engage their peers to help people overcome the many challenges associated with epilepsy
  • Health care professionals dedicated to changing the lives of those who deal with a variety of types of seizures and their consequences
  • People who have experienced the difficulties of friends and loved ones affected by epilepsy
  • People who have experience with supporting not for profit agencies
  • People with a willingness and energy for coordinating fundraising projects and events

If you hold yourself to high expectations, you will find board service very rewarding.   We are looking for people who will:

  • Attend four board meetings annually
  • Actively serve on one board committee
  • Advocate for our needs in the community among your colleagues and peers
  • Make an annual personal charitable contribution to the best of your ability

If you are interested in applying for a position on our board of directors, please contact Kevin Lindberg, executive director at klindberg@esswfl.org. to learn more about the application process.   To learn more about Epilepsy Services of Southwest Florida visit our website and view our video at www.epilepsy-services.org.

Portions of the above information used with the permission of Cause & Effect, Inc.
 


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 "Ask the Expert" - a new way to ask your questions or express concerns:

In response to the government health recommendations regarding COVID-19, we have cancelled our monthly group support meetings.  We want to "keep the conversation going" and would like to hear any questions or concerns you have regarding epilepsy.  These can be questions about yourself, a loved one, friend, family member, neighbor, etc.  We will gather questions and respond to them in upcoming newsletters.  All questions posted will remain anonymous and we will "ask the expert" to respond to your question or concern. Listed below is a question we received this month. 

How can I manage what triggers my seizures?"

Some people find that seizures may occur in a pattern or are more likely to occur in certain situations or under certain conditions. It is important to keep track of any factors that may bring on a seizure (seizure triggers).  Keeping a seizure diary may be helpful in doing this. This is important, because avoiding or managing seizure triggers is something you and only you can do to lessen the chance that a seizure may occur under those circumstances. Parents can also do this for their children with epilepsy.

Remember that not all people with epilepsy have seizure triggers, and for those that do, triggers might be different from person to person. In other words, not all persons whose seizures can be triggered have the same seizure triggers.

Triggers may be different from one person to the next. For example, seizures may occur only during sleep or when waking up. Some women may notice that they are more likely to have a seizure during certain parts of their menstrual cycle, while other people may notice seizures more often at times of high stress.

Things that may trigger seizures:

  • Missed medicine
  • Sleep deprivation
  • Stress
  • Alcohol
  • Drug abuse
  • Hormones/menstrual cycle
  • Nutritional factors
  • Over-the-counter medicines
  • Flashing lights

You can learn more about the triggers mentioned by clicking on the link below (Epilepsy Foundation) and additional information about tracking your seizures utilizing seizure diaries.
 
https://www.epilepsy.com/learn/managing-your-epilepsy/managing-seizure-triggers

To submit a question, please email: bcoleman@esswfl.org.


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Each issue of this newsletter we will feature members of our staff or volunteer board of directors with the intention that you will be able to get to know a little bit better the faces behind the names.

This issue we are featuring Maria Vasconcelos, ESSWFL Board Secretary.

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Maria Vasconcelos has been a registered nurse since 1992 and has been involved in research since 1989.  She is the founder of Medsol Clinical Research Center, Port Charlotte Florida since 2009. She is married to Theodoros Georgoulis, and they have two children, Victoria, age 26, who has a bachelor’s degree in psychology and is a study coordinator at Medsol, and Ioannis, age 24, who is a Theater major at FGCU.

Maria started her career at Yale New Haven Hospital in the pediatric Research Unit, where there were 2 dedicated 24 Hr. EEG monitoring beds (both external and intracranial monitoring) and completed the pre-op procedures and testings for epilepsy surgery . Although epilepsy has not affected Maria’s family, her patients seemed to be almost like family and she would see the struggles that both the children and the parents were living with.  She became involved in training the parents and families in epilepsy safety. She then transitioned into the pharmaceutical research world and continued to be involved in clinical trials in the epilepsy arena.

In 2009, Maria founded Medsol and conducted one of the first clinical trials for Lacosamide. It was then that Maria had contact with Epilepsy Services of Southwest Florida. “We had so many people with epilepsy that could not participate because they were not aware of Epilepsy Services of Southwest Florida and were un-medicated or treated for their illness.” Most of those people received help from ESSWFL and did participate in the study. It was amazing to see a young man that did get medicated.  Once in the trial he became seizure free, was driving, became engaged, got married and became a father. This could not have been done without Epilepsy Services of Southwest Florida.

Maria is proud to be able to serve on the Board of Directors of Epilepsy Services of Southwest Florida as she sees everyday what the impact epilepsy has on a human life and their families. Epilepsy is a disease, that unlike a physical disability, it is not always recognized. Unfortunately, epilepsy affects the mental, physical, financial and family aspects of one’s life. Epilepsy is probably one of the most unknown and misunderstood diseases and we need to educate the community that a seizure does not just intel as a generalized seizure.  That are many types of seizures and everyone is affected differently by the side effects of Anti-Epileptic Drugs (AEDs).

Maria’s goal is to support Epilepsy Services of Southwest Florida in assisting every underprivileged, uninsured person with epilepsy and their families to lead a life as close to normal as possible.


Alternate textDONATE TODAY! 

We need your help!  Donations are always welcome and without them we would not be able to do the work that we do.  Your gift helps ensure our clients continue to receive critical medical attention including access to neurologists, diagnostic testing and assistance accessing medications as well as case management services and prevention and educational programs to the community at large. Here are current donation opportunities:

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Louis and Gloria Flanzer Philanthropic Trust Matching Program:

The 2021 Flanzer Matching Gift Program will match any gift from $5 to $500 to Epilepsy Service of Southwest Florida. "Louis and Gloria Flanzer always believed in the goodness and generosity of people" said Eric Kaplan, co-trustee of the Flanzer Trust.  Please support Epilepsy Services by donating today. 
 
How to donate:

  • Click on the donate button and you will be directed to a page where you can pay either by PayPal or Credit card.
  • Type in the amount of your gift from $5 to $500. 
  • Designate Epilepsy Services of SWFL in the drop down menu at the bottom of the page to ensure your gift is directed to us.  
  • If you would like to make a donation by check, please make the check out to: The Louis & Gloria Flanzer Philanthropic Trust, 1843 Floyd Street, Sarasota, FL 34239 and indicate Epilepsy Services of Southwest Florida in the memo section.

Thank You! 

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Prevention & Education Services

If you would like the Community Outreach Coordinator to come to your business, your club meeting or your office, please contact Barbara Coleman, Community Outreach Coordinator at bcoleman@esswfl.org or 941-953-5988, Ext. 316 for a free presentation. Barbara will be glad to train your staff on how to respond to someone having a seizure or just make an informative presentation about epilepsy – the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer's disease.

About Us

The goal of Epilepsy Services of Southwest Florida is to assist in the process of empowering our patients toward self-management in order to lead as close to a normal life as possible.

Shop at Amazon Smile and support Epilepsy Services of Southwest Florida.

You can shop at Amazon Smile and the Amazon Smile Foundation will donate 0.5% of the purchase price of eligible products to our organization. Just select Epilepsy Services of Southwest Florida as your charitable organization.  You can use your Amazon account or set up an account at Amazon Smile.

We sincerely thank you for your consideration and support! 

For more info go to: https://smile.amazon.com/gp/chpf/homepage?orig=Lw==

Go to our website to learn more about our organization and take time to view our video:  epilepsy-services.org

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