Social Media for Good: Jennifer Bechard on the Detroit Hydrocephalus WALK

Jennifer Bechard

From Peg:

The following post is by guest blogger, Jennifer Bechard (available at Jenn.Bechard@gmail.com), whom I met on Twitter as @Jenn1423. She is Co-Chair of the Detroit Hydrocephalus Walk  and also suffers from hydrocephalus. Through this post, she hopes to raise awareness and funds for this little known condition, which significantly impacts the quality of life, of over one million Americans alone. I am very grateful to Jennifer for helping me to kick-off this Live with Abundance series, which aims to highlight the giving and positive attitude, which Jennifer represents to me, and obviously to so many others.

And now Jennifer’s story, in her own words…

What is Hydrocephalus?

Most people have never heard of this condition, let alone have to answer this question. Although hydrocephalus is not the typical household word, it is not uncommon. Hydrocephalus, commonly referred to as “water on the brain,” is a lifelong chronic neurological condition, characterized by an increased volume of cerebral spinal fluid (CSF), within the spaces inside the brain. Hydrocephalus affects over one million Americans from newborns to seniors and at present, there is no cure.

The most common treatment for hydrocephalus, and the most common procedure performed by pediatric neurosurgeons in the U.S., is surgical implantation of a device called a shunt. A shunt is a flexible tube and valve system, draining CSF from the brain to another part of the body. Oftentimes, repeated neurosurgical operations are necessary to treat hydrocephalus. Fifty percent of shunted individuals require a revising operation within two years. An estimated 40,000-shunt operations are performed each year in this country, as standard treatment. This is 1 every 13 minutes. Due to the lack of advancements in these treatment methods, many people with hydrocephalus are unable to lead full and productive lives.

Raising Awareness and Funds for a Better Way of Life

Jennifer Bechard _treatmentHydrocephalus is not discussed nearly enough. We need to be heard; our stories need to be told. The lives affected by hydrocephalus need to know there is hope for a brighter future and support is available! Awareness is vital and raising funds for research is crucial. There needs to be a better way of life for those suffering. The management of recurrent shunt malfunctions remains a serious problem for all too many shunted patients. I know this because at the age of 11, I was diagnosed with Communicating Hydrocephalus.

I have undergone 87 surgeries to correct my shunt, over 60 of them, in just the past 3 years alone. My life has been put on hold due to several shunt complications. My senior year of high school, my health declined tremendously, my life was changing, and I needed to adjust very quickly. Thousands of lives have been saved through shunt technology, but the overall design of shunt valves has changed little through the past 50 years. There is much more research that needs to be done to improve shunt technology, therefore improving the quality of life.

I can honestly say that I do not know what it feels like to live a day without a headache or what it means to be pain free. But I am not alone in this and that is exactly what inspires me to help find a cure. I want to share my experience and show people that with a little bit of faith and determination, you can overcome any obstacle you are faced with.

Detroit Hydrocephalus WALK

Jenn and Denise BechardIn 2007, my mom started the First Annual Detroit Hydrocephalus WALK. We are hoping that each year the walk will continue to grow and become a large statewide event. By the year 2010, the Hydrocephalus Association is hoping to have events in each state. This year, we are hosting the Third Annual Detroit Hydrocephalus WALK-WHEEL-RUN And Family Fun Day, at Livonia’s Rotary Park, located at 32300 6 mile, Livonia, MI 48152, on Sunday, August 2, 2009. Registration begins at 8:30 a.m. at Rotary Pavilions 1 and 2. The 3-mile walk is scheduled to start at 9:30 a.m.

Social Media for Social Good

Throughout some of my long hospital stays, the Internet became my outlet and source of finding information on Hydrocephalus. This past year, I began searching for ways to spread awareness of Hydrocephalus. What better way than forms of social media? Facebook, Twitter, blogging, and emailing are just a few of the forms of social media I have personally used to educate myself, spread awareness, network, and raise funds for the Hydrocephalus Association and the Detroit Hydrocephalus Walk. It is amazing how many people and networking contacts can be made in just one day through the Internet sites. In my opinion, it is the most productive and efficient way to reach people in today’s fast paced life style. Our WALK is growing quickly and word about the Hydrocephalus Association is spreading all over the Internet.

Detroit Hydrocephalus WALK_AwarenessOur 2007 Walk was planned in a two-month time span, due to my condition at the time. There was not much time for planning, so the quickest way for us to spread the word was through email. Our attendance for the 2007 Walk was 100 people raising almost $7,000.00. In 2008, I was hospitalized very often, so once again there was not much time for planning, but having learned from the previous year, we were able to take advantage of the Internet more, and as a result had over 200 participants, raising over $18,000.00. This year, we are estimating over 300 participants at the Walk, and I believe this is a result of all the research done and contacts made via the Internet.

Improving Lives Together

2008_Detroit Hydrocephalus WALKThis walk is truly inspirational and has given me the motivation I need to fight through each day. I truly believe I was given this life for a reason, and I am strong enough to live it. I have hydrocephalus; hydrocephalus does not have me. I will not let this illness beat me and I will never let the pain control my life. My goal and lifelong mission is to reach out to others, share my experiences, give support, and restore hope. I am more determined now than ever to raise awareness, funds for research, and bring those affected together. With the help of the Hydrocephalus Association, we will take steps towards improving lives.

Please Help

Please help The Detroit Hydrocephalus WALK reach our fundraising goal. Pass this onto family, friends, & co-workers. http://www.gifttool.com/athon/AthonDetails?ID=1488&AID=751

If you would like to attend the walk & would like more information, e-mail me at Jenn.Bechard@gmail.com or Denise Bechard at DJBhydrowalkMI@gmail.com.

For more information on Hydrocephalus and the Hydrocephalus Association please visit: http://hydroassoc.org/ Also, the Hydrocephalus Association made the recommendation list for the @Top10Causes on Twitter. Voting goes on until the 30th. Currently we are in first by about .5 The link is: http://ow.ly/ebIy

Thank you for your time and generosity.

Remember saving lives isn’t enough; we need to attend to the quality of life!

Post and Pitures Provided by Jennifer Bechard, CO-Chair Detroit Hydrocephalus WALK

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.

Kicking off the “Live with Abundance” Series: Social Media for Good

n my “Finding the ‘Abundance Mentality’ with Social Media post last month, I talked about how social media, most especially Twitter, has raised my awareness of so many worthy causes and increased my personal “abundance mentality.” In “Links for Social Good, May 2009: Breast Cancer Awareness,” I tried to keep that giving and positive spirit going in this blog. That was when JBBC of Journeying Beyond Breast Cancer commented on my blog, and my abstract good intentions quite suddenly became more personal. Through JBBC’s visit to my blog, and my subsequent reading of her blog, “a cause” I supported (mainly, due to my own mom’s diagnosis and ultimate passing from breast cancer almost twenty-five years ago), became a real person again, whose voice and journey continue to inspire me. @JBBC and I interact on Twitter now, and her story is part of my awareness and vicarious emotional experience (what I guess we call empathy).

Over the last month, I read a post somewhere that expressed concern over whether social media and online experience in general may desensitize us to others’ experiences, or possibly hurt the way we interact in person. I very much believe that technology is neither good nor bad in itself, and it’s more how and why we use technology that determines its impact. In the case of JBBC’s blog, technology connected me to an amazing person, and made me more deeply feel her story, and by extension, the stories of all those who are going through cancer treatment, or like JBBC, are survivors of that treatment, moving forward with the rest of their lives. If social media technology can isolate and desensitize us, it can certainly also powerfully connect people and help us better emphasize with each other. Through social media, I have also attended several in-person events and met people whom I would have never known otherwise—a somewhat big-deal for a natural introvert (as many writers are) and busy, working mom of three, who doesn’t have a lot of time to socialize these days.

Perhaps like most things in life, social media technology is double-edged, with balance as the key.

Enter Jennifer Bechard, also known as @Jenn1423, on Twitter. Throughout the course of this month, a persistent and cheerful voice kept sending me the occasional shoutout, about supporting the Detroit Hydrocepephalus WALK. I’m from Boston, and I had no idea what hydrocepephalus was at the time, so the fundraising effort didn’t immediately capture my attention. —But there was something about Jennifer’s avatar (the picture that’s part of her profile on Twitter) that I instantly responded to and liked. I think it was (and still is) her smile and warm brown eyes.

So, when I was looking for a topic for my “Live with Abundance” series this month, I thought of all Jennifer’s diligent efforts to raise awareness on Twitter, and that’s mostly why I decided to highlight her fundraising effort. I was also curious about the word and condition hydrocepephalus, which were totally unfamiliar to me.

Though I knew Jennifer was Co-Chair of the Detroit Hydrocepephalus WALK, I didn’t realize that Jennifer herself was suffering from hydrocepephalus, or the full extent of what that means, until I opened her moving, determined, and faith-filled story, in my e-mail.

Is there a dark side to social media? Sure, probably, and you can read about it, here. But when you read Jennifer’s story, and the stories of amazing strength, inspiration, volunteerism, and social action that I plan this “Live with Abundance” series to present, you can rest assured that social media has a bright side, too.