Catch the Wave: 3rd Annual Detroit Hydrocephalus WALK (Part II)

Note From Peg:

The following post, by Jennifer Bechard (available at Jenn.Bechard@gmail.com), is the second of a two-part series on the Detroit Hydrocephalus WALK. Jenn is Co-Chair of the Detroit Hydrocephalus WALK and also suffers from hydrocephalus. She first guest-blogged here in the June post, Social Media for Good: Jennifer Bechard on the Detroit Hydrocephalus WALK. For more information on Jennifer, see her personal story at Gabriel’s Life, or her own newly launched blog, Just Believe.

For more information on hydrocephalus, see the Hydrocephalus Association. (Please also consider voting for the Hydrocephalus Association, at Intel’s Vote for a Cause Competition, one vote per day, on Facebook.) Other resources and fundraising sites are located under “Related Links,” at the conclusion of this post.

In her original guest-post, Jenn helped kick off this Live with Abundance series, which focuses on using social media for good. In that first post, Jennifer’s goal was to raise awareness and funds for hydrocephalus, which significantly impacts the quality of life, of over one million Americans alone. Here, Jennifer continues to describe how 343 people turned out on August 2nd to walk for a cure as well as some of her own goals for continuing to make a difference.

And now, in her own words, the second part of Jennifer’s follow-up on the 3rd Annual Detroit Hydrocephalus WALK…

This past year, I felt I needed to take a more active role in promoting advocacy and sharing my personal experiences, to show others that current treatment is not acceptable. It is necessary that people throughout the United States become more aware of hydrocephalus and the long-term effects this condition has on a person’s life.

Educating Others on Current Treatment: “Hakim” Programmable Shunt by Johnson & Johnson Codman

One aspect people loved the most about the WALK was the Johnson & Johnson Codman table, which Sybrina Evans, a shunt rep for Codman, was hosting. In 1998, Codman introduced the “Hakim” programmable shunt and since that time, it has emerged to become the number one-selling CNS shunt in treatment of adult hydrocephalus, also known as NPH. Sybrina’s table consisted of the shunt tubing, several valves, the magnetic metos changer, a model of the brain, and a model showing the bur hole drilled into the skull, when inserting a shunt. It was a hands-on experience that was extremely educational. People were able to see what was actually keeping many of us alive. But this unreliable tubing also showed people the reason why many of us are not able to live a fully productive and successful life.

Raising Needed Funds and Supporting Each Other

Overall, we brought in almost $24,000.00, with more donations coming in! Throughout the past three years, we have raised more than $48,000! We have formed a lifelong bond with those affected and found a new source of support for the trials hydrocephalus will continue to bring.

Using Social Media to Spread the Word and Build Community

Our WALK seems to be growing bigger each year, and a lot of this has been because of social media. If it weren’t for my Twitter account, I would have never been able to advertise, as I did this past year for our event. The Internet was our source of spreading the word and bringing in donations and corporate sponsors. On Twitter, I found a website called Gabriel’s Life.  The purpose of this website is to serve as a source of information, create hope and inspiration, and help build a community through the shared voices and stories of people living with hydrocephalus. Through this website, I was able to contact people in my community who had hydrocephalus or knew someone with this condition.

The Internet has helped me keep in contact and updated with several of the families I met at the Detroit Hydrocephalus WALK. We have even formed our own Detroit Hydrocephalus WALK fan page on Facebook. This has given the Detroit WALK a way of keeping people updated on current events.

Supporting Others

After talking with many of the children and adults, I decided I needed to do something else to give support to others in Michigan. It has been my dream to start a support group, which people could rely on during their difficult times. Also, it would be a place where we could come together to celebrate our accomplishments. With the help of the Hydrocephalus Association, I am in the process of forming their first hydrocephalus support group in Michigan.

Feeling Renewed Purpose to Help Make a Better Tomorrow

There have been many ups and downs this past year, but I have been able to find myself again. I realized why I was placed on this earth.  My purpose in life is to support, encourage, and help others beat this debilitating disease.  I consider myself lucky, because at the age of 21, I found my reason for living. Maybe the reason I have hydrocephalus is because I can help make a small change in the lives of others who are suffering.

Our WALK might be over, but the journey has just begun. Catch the wave and help us eliminate the challenges of hydrocephalus!

Related Links

Please contact the author Jen Bechard  directly, for any rights to republishing this post. Peg Mulligan’s blog is protected by copyright, but I give any appropriate rights back to guest bloggers, for posts they may have authored, but which were hosted at this blog.

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