Epilepsy Foundation

2012 National Walk for Epilepsy and Social Media

On March 31, 2012, I attended my third National Walk for Epilepsy. This year's walk was the 6th Annual National Walk for Epilepsy on the National Mall. Seeing thousands of people inspired me. Being seen motivated me to do more for our community so that we can connect to all those who feel isolated.

 

 

 

At the walk, Epilepsy Foundation staff asked walkers who EFA could improve the website. At the  booth next to the website group, the social media team photographed walking teams so that pictures could be posted on our EFA Facebook page.

 

How do you think we could improve the site? How can we have better social media programs or strategies? What would get you more excited to share more and share the site more often?

 


2012 National Walk for Epilepsy Community - Images by bryan farley

Above is a slideshow of more than 200 walk photos. If you attended, please view and comment below if you see yourself. I will upload these to the eCommunity site or the EFA Facebook page so that everyone can have access to these. You can also take the blue link "2012 National Walk for Epilepsy Community" and share the photos.


Please answer the question below. What do you want in the website and social media for EFA and the National Walk?

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Tags: Epilepsy, Media, National, Social, Walk, for

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Comment by bryan farley on June 11, 2012 at 1:57am

Thanks Southie! 2012 was much better than 2011. You really would have been cold earlier. It was worth it though. Once we started walking, we warmed up, and the sun came out pretty soon. There was so much energy.

Comment by Southie on June 8, 2012 at 12:17pm

I <3 every single one of those pics but BRRRRRRRRRRR!!!! This Tropical Sunbird would have been frozen!

Comment by bryan farley on April 18, 2012 at 2:10am

Jamie,

It is a wonderful event. I did not notice the people in front of you specifically, but I saw thousands of people. The energy is amazing.

Comment by Jamie Campbell on April 17, 2012 at 7:18pm

:):) awesome! Yes, I wish we would have exchanged info prior too... I would have said something! Did you see the girl in front of us who had a seizure during the walk? Luckily her mom (I think?) caught her. Overall a great event. We will definitely be there next year!

Comment by bryan farley on April 17, 2012 at 5:14pm

I will send you the photo. As you went by, I remembered thinking, "I think I know that team." 

Next year, we must plan better so we can meet. Maybe have a tent?

Not sure how you get the other photos. Do you use the "Official Epilepsy Foundation of America" Facebook Page?

Lastly, I like all the comments. It makes me look popular. Please send the link to others and ask that they comment often too! :)

Comment by Jamie Campbell on April 17, 2012 at 3:01pm

Sorry for all the comments!  Do you know how I can find other pictures that were taken of us?  Also, can you email me that picture of us with the FTW shirts? :) Thanks Bryan!

Comment by Jamie Campbell on April 17, 2012 at 2:48pm

and i love your pictures! i see me in one of them... :)

Comment by Jamie Campbell on April 17, 2012 at 2:43pm

Bryan,

 

I spoke with Sam at the Walk... I offered my assistance with a chat feature (again)! Hopefully we can work together and make things happen for this site.

 

:)

Comment by bryan farley on April 16, 2012 at 11:41am

Thank you Katrina,

Great ideas about improving our brand and communication.

There is a site called Bens Friends (www.bensfriends.org). The site is for people with or affected by rare diseases and disorders. We might use this site as a model (or recommend the site to people who need its services.) I contacted the organizers, because I was impressed that the organization was giving voice to those who were affected.

In our community, we have EPILEPSY, but we also have many niche communities within the larger community. We could benefit from someone in charge of the social media project. Many of us know that if were are going to promote ourselves and each other, there are better methods than the current site.

Our interns have done an excellent job, but people take internships to learn. To be fair to EFA, large well funded companies turn their social media strategy over to college interns. I would like to see the Epilepsy Foundation become an example of great communication and support.

Comment by katmoody.mommy on April 16, 2012 at 12:16am

I think I would like to follow Jessica's great idea and post about this as part of the continuing discussion on furthering awareness and advocacy efforts. 

The most engaged online communities are the ones that are driving the conversation in their chosen niches. I think this site is similar. I would have a lot of thoughts I would want to share privately, as a website designer, ;-) but offhand, I would consider pulling together a promotions team of parents and advocates and others dedicated to the community here, who would be willing to to literally help promote the site on all social media networks. 

This includes the visually driven Google+ and Pinterest as well as Facebook and Twitter, but also means engaging with other blogs and sites in this niche, possibly even working together on producing all-encompassing awareness drives.

I mention a special promotions team, because the people who are most involved will want to do it anyway, but having a plan will allow them to help more specifically, with the knowledge that they will reach more individuals and family members who can use the community resources available. These plans would include a posting schedule for how often to post to certain networks, what posts you want promoted (for instance, right now I would have them promoting  this post and your initiatives in DC). Also, having something for folks to share, some bling that allows them to support the site for free, but also provides the site with backlinks and further potential for traffic - blog buttons are huge for a reason, and cause-driven ones tend to be clicked more than general advertising ones are.

I would have other ideas but would love to see others chip in here. Think I'll put up a post in the next day or two ... the underlying theme is online advocacy  and building a supportive web community for those dealing with epilepsy. 

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