This is the most important blog entry I will ever write. I say this because tonight I am asking you to take action on something that is very important to me. I know what you are thinking, “Don’t you always ask for something when you blog?” Touché my friends, yes I do. But, usually I am asking you to register for the annual conference or attend a training event. These are mutually beneficial: you become a member of EASFAA and we drop some knowledge on you.
Tonight is different.
Tonight I ask you to give of your time. Tonight I ask you to spread a message. Tonight I ask you to donate money to a great cause. Tonight I ask you to accept a challenge (more about that in a minute).
On Saturday, March 22, 2014, Team EASFAA will join hundreds of other teams in participating in the 8th Annual National Walk for Epilepsy in Washington, D.C.
This is a cause that is very near and dear to me. I have a beautiful niece named Ainsley that suffers from a very rare genetic disorder called Ring 20, which is characterized by inoperable, difficult-to-control epilepsy. This disorder causes her to have seizures that can last up to several minutes and completely drain her of energy. She does not seize every day (most days to be sure) but the threat is always there. She takes a battery of medication each day to keep it in check and, while this medicine certainly helps, it can also leave her at a cognitive disadvantage to her peers and in a constant state of tremors.
Epilepsy does not take away her great smile and her affection but her life has challenges that other ten year olds do not have to face. A few weeks ago she had vagus nerve stimulation surgery (you can read more about that here) in an attempt to minimize the seizures. So far the results have not been as positive as her family would like but, as her mother reminded us, it is a journey and this is a new beginning.
I have to be honest with you; I never knew much about epilepsy until my niece began having seizures. I didn’t realize that 1 in 26 Americans will suffer epilepsy at some point in their lives. I assumed that a person had a seizure and then they were fine. While this is can sometimes be the case, most struggle with it every day and the next seizure is never far away.
The impact of epilepsy goes beyond the person afflicted. Families are impacted. Ainsley’s mother devotes much of her waking energy managing her daughter’s seizures. She spends a lot of time speaking with doctors and the insurance company. She always needs to be available should he daughter have a seizure at school (which happens) so she can pick her up. Her father works full time. Like other families with special needs children, keeping their insurance is extremely important.
Then there is Ainsley’s sister. While she does not suffer from epilepsy, it is a constant presence in her life. She is mature beyond her years.
So on March 22 I walk for Ainsley. Do you know someone who has epilepsy? Will you join me? If you are in the DC metro area then join me. If not, that’s OK. You can register for a ‘virtual walk’ (it’s OK if you don’t walk, I won’t tell). By signing up you are still helping us raise money. Anyone can go visit the EASFAA walk page and make a donation.
Our goal is to raise $10,000 by March 22. We have a long way to go but I know we can make it. My EASFAA family is a compassionate and generous group. So too is our extended family of financial aid professionals around the country. Please sign up to walk or make a donation. And after you have done so spread the word.
Share this information on Facebook. Mention it at your next staff meeting. Tell your family. Let’s raise $10,000 for the National Epilepsy Foundation so they can continue to help those that need it.
We will be blogging about our progress over the next few weeks. If you have an epilepsy story to share please send it to email@example.com. We will make it anonymous of you wish it to be.
Please join our team (and Ainsleyfor the walk or make a donation today so we can help make a difference in the lives of those affected by epilepsy!
I appreciate all of you so much and I am so honored to serve you as president this year.
8th Annual National Walk for Epilepsy, Washington, DC
Saturday, March 22, 2014
Join the team/make a donation by clicking here or by copying and pasting the following link: http://giving.epilepsyfoundation.org/site/TR/Walk/walk?team_id=29940&pg=team&fr_id=1970#.UwpiZfRdVTM