Stories From Smaller Nonprofits: RE Children's Project


Stars In the spirit of the season, during the month of December, Diva Marketing opens its virtual doors to tell the stories of smaller nonprofits.Through out the month you'll learn about organizations you may not have heard of .. but each one will will touch your heart. 

This series is inspired by Laura King Edwards who launched Taylor's Tale, on behalf and in honor of her little sister, to raise awareness for Batten disease.  As Laura says, "Nothing should stand in the way of a dream." Through these posts perhaps we'll create a little magic that will help people get closer to their dream.

The Story of RE Children's Project told Rob Petersen, Rob peteresen of Barnraisers, an online social media solutions company. 

The energy and drive of non-profits founders can rub off on you the instant you’re with them. Seth Wohlberg, Founder of the RE Children’s Project, a 501 (c) (3) dedicated to finding a cure for a rare disease, Rasmussen’s Encephalitis, fills that role and then some.

Children's project founders Rasmussen’s Encephalitis is a rare, chronic inflammatory disease that affects one hemisphere of the brain.  It causes frequent, uncontrollable and severe seizures, loss of motor skills and speech, and paralysis on one side of the body.  Rasmussen’s Encephalitis almost always impacts children. It affects Seth’s daughter, Grace.

Photo: Grace with her mom and dad.  

The only known “cure” is a radical brain surgery called a Hemispherectomy in which the affected half of the brain is removed with the hope the brain will re-wire itself and allow the individual to lead a more normal life.  Seth has another idea for a “cure.” Let’s find a real one. 

Rasmussen’s Encephalitis has changed Seth’s life as you might imagine.  By day, he is a partner in a boutique investment bank in NYC.  When that day ends, he begins another job as Founder of RE Children’s Project, his second career.  He is the most driven, hard-working and inspiring person I know.

I donate my time using social media to help spread the word and encourage donations.  If you know Seth, you know he has a very good chance at success.  You also know he writes a great blog and has a blogger’s perseverance.   His organization and situation lends itself to the perfect marriage of social media and grass roots outreach.

Social Media Does Social Good

Here are 3 ways social media did social good for Rasmussen’s Encephalitis through the RE Children’s Project.

1. AUTHORITY AND SEARCH:  RE Children’s comes up high on the first page of Google in a search for Rasmussen’s Encephalitis.  It is in the company of the most advanced scientific and medical research.   If you request Google Alerts for information on the disease, every week it’ll include the RE Children’s blog.  This happens because social media drove search engine optimization.

2. COMMUNITY: Less than 500 people worldwide are diagnosed each year with Rasmussen’s Encephalitis.  Now, many of the affected families all over the globe are part of a community built through RE Children’s social media strategy and networks.  Social media also keeps Seth and his community in touch with Cris Hall, Founder of the Hemispherectomy Foundation, a non-profit that serves the hemisphrectomy community, as well as several other organizations devoted to rare disease and epilepsy research. 

3. WORKING TOGETHER: Seth has put not only a great deal of time into his quest for a cure, but in one short year he has sponsored a first of kinds research conference this past October in which he brought together over 50 global experts across research disciplines to Deer Valley, Utah.  The purpose of the conference was to define a research agenda for the disease. 

He has elevated the global discourse and interest in the disease and is continuing this momentum with another conference in February and a major fundraiser in Connecticut.  Readership to his blog and social networks builds and spikes with each event as social media and grass roots efforts work together to generate higher awareness…and social good. 

Social media works because 1 person tells 5 people who tell 15 people and so on.  During this holiday season, I am asking you to spread the word and do 3 things so the RE Children’s Project sustains its mission to find a cure for Rasmussen’s Encephalitis:

1) Send the web address to 5 friends who have not heard about the effort

2) Read the RE Summary and Facts in the Must Read tab (link 10)

3) Please consider a donation of $10 or $20 through the RE Children’s web site “donate” tab. 

After all, it’s called social media for a reason. 

Logo re children's project  Learn More About RE Children's Project

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 Special wishes to Grace for a wonderful holiday. Thanks for inspiring so many people.

Read more small nonprofit stories.


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Many thanks for helping us spread the word about RE.

Posted by: Seth Wohlberg on Dec 6, 2010 10:02:27 PM


Thanks so much for letting me tell this story. It a wonderful thing you're doing, not just for RE Children's project, but for all small non-profits that are making a difference to let their voice be heard during the holidays.

Happy holidays to you.


Posted by: Rob Petersen on Dec 7, 2010 10:54:49 AM

@seth @rob - it's my pleasure. hope the post brings awareness about Rasmussen’s Encephalitis to a few more people.

Posted by: Toby Bloomberg on Dec 7, 2010 8:17:18 PM

Highly appreciative effort by you! Social media can really help to non-profit activities and be more useful to its original concept of connecting huge number of online people. It is really good to see that non-profits have realized the need to utilize social media with their existing marketing plans. This can really help them save their Time to spread their word into social network activists.

Posted by: Raj - SEO PPC Blogger on Dec 8, 2010 1:31:09 PM

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