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Ever Volunteer? Why Not?

Mon, 07/03/2006 - 09:58
Topic: Advocate for Epilepsy
After having had epilepsy for 1/2 of my life, and participating in awareness campaigns of major hospitals, social service organizations, and even street fairs, I am still shocked by the percentage of we "E people" who chose not to come out of the proverbial closet, admitting we have epilepsy, and offering our services. I've been on national TV/radio interviews, have had articles published, even did volunteer work while working for several years in Japan. I try to write to local, state and national governmental officials as often as possible. And not just complaints in which I tell them what they can do to themselves. But actual thoroughly-thought-out reports on where I find budgets and attention failing we 2.7-million Americans with epilepsy. You certainly live near a city that has an office of the Epilepsy Foundation, similar organizations, or even a local discussion group.
    Have you ever gotten in touch with them and asked if you could help? Anything, really, from licking and stuffing envelopes with things they're mailing, to speaking at seminars sponsored by reputable hospitals.
      If not, do so. I know they'd appreciate your help! Great way to make friends.

Comments

Re: Ever Volunteer? Why Not?

Submitted by lorelama on Fri, 2008-04-04 - 10:33

The biggest thing about volunteering is even if you may not have a lot of time to do it monthly or weekly......you'd be amazed what just "telling your story" can do. You can make an impact because somewhere in that story someone will relate, it may not be regarding epilepsy, but they will connect with having to quit school, being a caregiver, a single parent, medical bills, no insurance, losing a job due to your disability, etc.

I tell my story when ever it is applicable, epileptic, battered wife, single mom, military wife, and on and on. I survived, I met the challenges and am winning, because I share my stories so others may understand, so others will fight for me and others like me, so my struggles will be for naught.

Volunteer your story, your time, your experiences, your wisdom, and help educate others.

Lorelama MN

Well behaved women rarely make history.

The biggest thing about volunteering is even if you may not have a lot of time to do it monthly or weekly......you'd be amazed what just "telling your story" can do. You can make an impact because somewhere in that story someone will relate, it may not be regarding epilepsy, but they will connect with having to quit school, being a caregiver, a single parent, medical bills, no insurance, losing a job due to your disability, etc.

I tell my story when ever it is applicable, epileptic, battered wife, single mom, military wife, and on and on. I survived, I met the challenges and am winning, because I share my stories so others may understand, so others will fight for me and others like me, so my struggles will be for naught.

Volunteer your story, your time, your experiences, your wisdom, and help educate others.

Lorelama MN

Well behaved women rarely make history.

Re: Ever Volunteer? Why Not?

Submitted by plopdan on Fri, 2008-04-04 - 12:53

I am lucky living in the United Kingdom we are well aware of epilepsy.  What little I might have to pay for my meds I am exempt from paying.  Theres lots of activitys ect for epi's.  So I am at the moment trying to help a mother of a lennox gaustalt sufferer in California. Her daughter has only got 3 months worth of the only meds that work it's called Frisium apperantly the FDA have disallowed it for some reason, she's willing to pay what ever she can to probably save her daughters life.  Now you lot seem to be fighters I am begging you to help her find anywhere, any country that still stock it.  My e-mail address is plopdan1@googlemail.com please e-mail me and I will pass on any info to her or give me your e-mail address and I'll pass it on.  I'll say again please help her.  Does it really take some one from another country to help some one in yours.

Thank you plopdan u.k

I am lucky living in the United Kingdom we are well aware of epilepsy.  What little I might have to pay for my meds I am exempt from paying.  Theres lots of activitys ect for epi's.  So I am at the moment trying to help a mother of a lennox gaustalt sufferer in California. Her daughter has only got 3 months worth of the only meds that work it's called Frisium apperantly the FDA have disallowed it for some reason, she's willing to pay what ever she can to probably save her daughters life.  Now you lot seem to be fighters I am begging you to help her find anywhere, any country that still stock it.  My e-mail address is plopdan1@googlemail.com please e-mail me and I will pass on any info to her or give me your e-mail address and I'll pass it on.  I'll say again please help her.  Does it really take some one from another country to help some one in yours.

Thank you plopdan u.k

Re: Ever Volunteer? Why Not?

Submitted by debbie1202 on Tue, 2006-09-19 - 10:31
You know that is some great ideas! I have gone through the surgery and I am finished with that part and now I just want to helpe the people with epilepsy! I will be talking with my county this month to see if they need any help with anything. Thank you for that advice!Debbie1202

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