Friday, November 30, 2012

What Epilepsy Means to Me: Epilepsy Resources and Organizations

Today is the last day of Epilepsy Awareness Month – the “official” Awareness Month, I mean. 

As anyone who is familiar with epilepsy knows, there’s also the “unofficial” eleven other months we spread awareness, advocate, and take care of seizure and medication challenges. 

Through the interviews this month, I learned so much about not only epilepsy but about the resilience and spirit of people. About overcoming obstacles and not giving up.  About dealing with unthinkable loss and doing so much for others anyway.  About wanting to become involved because of the passion for this cause.

About just wanting to be heard.   
Robert is the reason I'm passionate about
epilepsy awareness and education
Some people shared with me they had never told their story of epilepsy before.  One mom told me her friends and family have a better understanding of her situation now. 

Several months ago, I wrote about a few epilepsy resources who I found to have great information as well as strong advocacy efforts.  This month, I have learned of so many more!  Included in this additional list are the organizations and websites of those who were interviewed. 

Many of those interviewed also recommended websites they are passionate about and I will cover those in a future post. 

Christy Shake: Calvin’s Story.  My favorite quote from Christy was, “I want to kick epilepsy’s ass.”  That’s all you need to know about Christy.  That and she’s smart, a terrific writer and a tireless advocate for her son.  She writes one blog post a day at Calvin’s Story and partners with CURE: Citizens United for Research in Epilepsy to raise funds for a cure here   

Linda and her son, Jason.  Linda and I have shared many stories since we’ve met because her Jason and my brother, Robert, are so similar.  Linda is a devoted mom and also does fundraising for CURE Epilepsy in Jason’s name here.

Susan Noble, Epilepsy Warriors Foundation.  Susan said in her interview, “As President and Founder of the Epilepsy Warriors I am striving to reach as many people within the local communities to help educate and bring an end to the stigma of epilepsy.”  She’s a warrior herself so I have no doubt she will succeed! 

Michelle Reichartz and Alex DeYoung, Calm the Storm Within.  These two best friends found a shared passion: epilepsy.  Michelle shares in her interview, “All I've ever wanted was to understand what's happening to me and that's what CTSW is all about for me. No matter what, I just want to understand how epilepsy works so hopefully we can begin to better manufacture ways to control the cause.”  Michelle and Alex have set a goal for their Facebook page likes in November so, please take a minute to “like” their page.

Gina Restivo, Fly Danny, Fly.  Gina has become a passionate advocate for epilepsy research and made a terrific point in her interview, “when it comes to actual funding for research, there needs to be a public outcry from more than those suffering with Epilepsy and the foundations supporting them.”  She is so right!  Everyone – affected or not – needs to be involved in finding the cure.  A portion of the proceeds from the sale of Gina’s book goes toward the Danny Did Foundation. 

Julie Hutchison, the Chelsea Hutchison Foundation.  Julie and her husband founded an organization in Chelsea’s name after suffering the unbearable loss of their daughter.  They have helped many, many people with epilepsy and their families through their organization.  Julie reminds us in her interview, “Be your own advocate!  Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective.” 

Mandy Krzywonski, My Life as Mandy . . . with Epilepsy For someone who is only 19 years old, Mandy has accomplished an awful lot!  She runs a popular blog, donates care baskets to children in the hospital and runs several support groups on Facebook.  She’s got something for everyone!

Connor Doran, Dare to Dream.  Another successful young adult!  (Boy, I better get with it!).  Connor has been a Top 12 finalist on America’s Got Talent with his Indoor Kite Flying act. He performs all over and is a role model and inspiration for many with epilepsy (and many without!). 

Many of these organizations also have their own Facebook pages providing additional information and many can also be found on Twitter.  I encourage you to “like” their pages or follow them on Twitter.

The interviews are over (for now) but if you’re interested in telling your own story about epilepsy or know someone who wants to tell their story, please contact me at  I plan to share the stories for as long as people want to tell them!

Thank you all for your support during Epilepsy Awareness Month!  Reading the interviews, posting comments, indicating “likes” and “shares” on Facebook and RTs all meant the world to me.  (Especially the RTs since I’m a Twitter addict). 

So what’s in store for December?  Should we have a new interview every day about the holidays?  (That’s my husband you hear screaming in the background.)

They may not be every day but there will be more posts about epilepsy, advocacy, the working caregiver and, of course, Robert!  Maybe one or two about the holidays . . .


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