On the #RedSoxTweetup: A Day for Champions, in Boston, MA

Yesterday, my husband and I braved the cold and damp to take the kids in to Fenway Park, for the very first @RedSox TweetUp. The pre-game event was originally scheduled to take place in the area on the right field Bud Deck. The location was moved to The Bleacher Bar, on Lansdowne Street, because of the rainy forecast. Despite the weather, the event was very well-attended and lots of fun.

 First-Ever Red Sox TweetUp

We were really pleased that both The Bleacher Bar and the Boston Red Sox were so accommodating about kids…The “Bleacher Fries,” topped with salsa, cheese, & jalapenos, were a big hit with the entire family (pun unintended), 🙂 and the service was great.

There was also a guest appearance, by Wally the Green Monster–the official mascot for the Boston Red Sox. Autographed giveaways and ticket upgrades kept things interesting. So, too, did appearances by Red Sox reporter Heidi Watney, from the New England Sports Network (NESN).

Despite the overcast weather, spirits at Fenway Park remained high throughout the match-up, between the Boston Red Sox and Detroit Tigers.

Though our TweetUp tickets (for just $30.00 each) were for Standing Room Only, I was happy to discover we had a great view of the game, behind first base, as well as an overhang above us, which protected us from any occasional drizzle.

Former MA Governor Paul Celluci: A Real Champion

For me, probably the most poignant part of the evening came pre-game, when former Governor Paul Cellucci, took to the field to raise money for ALS research. He was accompanied by past political colleagues, as well as UMass neurologist, Dr. Robert H. Brown Jr., and the medical school’s Chancellor, Dr. Michael F. Collins.

Celluci, who has been diagnosed with ALS (often called  Lou Gehrig’s disease), announced the UMass ALS Champion Fund, which aims to raise millions in support of ALS research, at the University of Massachusetts Medical School. (For more information, you can also join the fight on Facebook or Twitter.)

Earlier, MA Gov. Deval Patrick had honored Celluci’s initiative, declaring Thursday as “Paul Cellucci/ALS Champion Day” in Massachusetts, while Boston Mayor Thomas Menino had declared the day, as “Champion Day” in Boston.

The Newest Fenway Tweep

At one point before the game, the usher saw us struggling to photograph the entire family. She thoughtfully offered to take the picture. Almost amazingly, the kids all cooperated and no one blinked their eyes—leaving us with a snapshot souvenir of our young family together at Fenway Park—a moment preserved in time, which we’ll always remember.

Another snapshot souvenoir involves my son, who btw, was the life of the post-TweetUp party, among a group of friendly Fenway Tweeps. We’re still grateful to them, for making so much of our chatty little boy, during what for him was a very exciting time.

My son will never forget his first Red Sox game (we don’t count the one from when he was too young to remember). It was a fitting close for him and for us, when the Red Sox walked it off again, in a 4-3 victory.

This post is part of my ongoing Social Media for Good series.

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Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog

Thoughts on Plymouth, Squanto, and Thanksgiving

Overview: Neddal Ayad is a writer and photographer, based in Newfoundland, Canada. My family and I enjoyed meeting Neddal over Columbus Day weekend, in Plymouth, MA, where he was researching Squanto, as part of the Cupids 400 project. Neddal’s mother, Margaret Ayad of Baccalieu Consulting, is a friend of mine from Twitter. She coordinated my family’s meeting with her son, after I expressed a common appreciation for history and education, which she brings together so wonderfully in her online resource, Squantum.  

Peg’s Note: The following guest post, by Neddal Ayad, is part of an ongoing series here, which celebrates stories of those who live with abundance. The connection of Squanto, the Pilgrims, and the first Thanksgiving to this “Live with Abundance” series, may at first seem not so direct, as the connection to previous guest posts in this series.

The more I reflect, though, the more I realize there is no better metaphor for living abundantly, than the hospitality the Native Americans showed toward the Pilgrims, the gratitude the Pilgrims expressed for their blessings, and the resilience of both Native Americans and Pilgrims alike, given what the author below aptly notes, as their respective isolation and dislocation.

In the post below, Ayad portrays Squanto, who reportedly taught the Pilgrims how to fish in the New World, as a moving and fascinating protagonist, who even today, captures the essence of endurance, and helps us move across cultures.

Here are Neddal’s thoughts and pictures on Plymouth, Squanto, and Thanksgiving.

Thanksgiving Holiday

Most people in English-speaking parts of North America have at least a passing familiarity with the story of the First American Thanksgiving.  Growing up in Newfoundland off the east coast of Canada, I picked up the story in bits and pieces from school, from movies and television, from trips to the US. In fact, I think we may have covered American Thanksgiving in more detail, than the Canadian version.

And by detail, I mean that growing up, I knew that Thanksgiving (American style) involved parades, football, and turkey.  Oh yeah, and there was something about Pilgrims and a friendly Indian named Squanto, and corn, and turkey……. and that to Americans, it was a really big deal.

Canadian Thanksgiving, on the other hand, seemed like a non-event.  There was turkey and a day off from school, but it seemed very much like a random holiday.  I hate to admit it, but I still don’t know the provenance of the Canadian holiday.  Ask me about Guy Fawkes’ Day (November  5th), and I can lay out an essay. Ask me why Thanksgiving in Canada is the 2nd Monday in October, and you’ll get a blank look and an apology.


Tie Between Plymouth and Cupers Cove (Cupids)

Where is all this going?  This year, around Canadian Thanksgiving, I was in Plymouth, Massachusetts researching Squanto (aka Squantum, Tisquantum, Tasquantum) – a major player in Thanksgiving, US edition.  I was there because prior to his encounter with the Pilgrims, Squanto spent time in the English colony of Cupids (Cupers Cove), located in the south-eastern portion of Newfoundland.  During 1617 -1618 when he lived in Cupids, by some accounts, he learned how to use fish as fertilizer, something he would go on to teach the Pilgrims at Plymouth.

How he came to be in Cupids is long and involved and is covered in detail here: Squantum.  Little is known about what Squanto did in Cupids or even why he was sent there in the first place.  There is some speculation that John Slaney, a merchant with whom he lived in London, may have sent him to the colony as a go-between to help establish trade between the colonists and the Beothuk, who inhabited nearby Trinity Bay.  Regardless, Squanto wanted to return to his own home and his own people.  In 1618, the adventurer Thomas Dermer agreed to take him back to the eastern seaboard of the United States.  (See Squantum.)

Squanto: a Warrior Shaman?

I should mention that much has been made of Squanto’s resilience – he survived slavery, he adapted to living in Spain, England, and Cupers Cove, and eventually to living as a kind of exile amongst the Pilgrims of Plymouth Plantation.  One theory for his endurance is that he may have been a pneise, a warrior shaman who in Massachuset society advised and protected the sachem or chief – something akin to the secret service but with more intense training (see Charles Mann’s 1492 – Amazon Books ).  In fact, the name “Squanto” has religious overtones in Massachuset society; it translates to something close to “the wrath of God.”

All this must have served him well when he first returned to Southern Massachusetts.  In the five or so years from the time he was captured by Thomas Hunt in 1614 and his return with Thomas Dermer in 1619, close to 90% of the natives in the region had died due to an outbreak of what experts believe was viral hepatitis.  Squanto’s entire village was decimated, along with most of the Massachuset Confederation.  Dermer’s account of the voyage sounds like a trip through a nightmare.  They found village after village abandoned, or worse, filled with corpses.  Eventually, they encountered a handful of survivors who brought them Massasoit, the sachem of the Wampanoag Massachuset, which sets the stage for Squanto’s meeting with the Pilgrims.

Isolation and Dislocation

The town of Cupids is about 15 minutes from where I live in Newfoundland.  The plantation site has been excavated extensively by Bill Gilbert, who is chief archaeologist with the Baccalieu Trail Heritage Corporation. ( See Baccalieu Digs Website.) I visited the dig site shortly before travelling to Plymouth, and shortly after returning.  One thought that struck me was that in comparison to Plymouth, Cupids must have seemed quite bleak.  Newfoundland landscape is known for its break starkness, very rocky, mainly coniferous trees, cliffs, and rough seas.  There is a beauty in the starkness that is almost impossible to describe, but to Squanto who grew up with his family and his people in the area which is now Plymouth, with its lush deciduous forests and low coves and beaches, living in Cupids must have been miserable.

While I was in Plymouth, I could not shake a feeling of heaviness; sadness is perhaps a better word.  Plymouth itself is a pretty town, and the area around it is beautiful.  But it was difficult to lose Thomas Dermer’s description of all the abandoned and decimated villages. Plymouth was once Patuxet, which was Squanto’s birthplace and one of the native villages obliterated by disease.  And in travelling around the town, I was thinking about exile and how Squanto may have shared the Pilgrims’ sense of isolation and dislocation in the New World, since they, like him, had left everything they knew behind.  Heavy, as I said.

The photos were taken at the Wampanoag Homesite on the Plymouth Plantation.  The clothing and activities would be similar to those that Squanto knew, growing up in his village of Patuxet.

Related Links

Baccalieu Digs A Website of the Baccalieu Trail Heritage Corporation

Cupids 400  Official Website for the Celebration of Canada’s First English Colony

Indian New England 1524-1674: A Compendium of Eyewitness Accounts of Native American Life (Heritage of New England Series)  Ronald D. Carr, ed. (Description on Amazon)

SquantumA Baccalieu Consulting Website

Thomas C. Mann, 1492.  (Description on Amazon)

William Bradford and Edward Winslow, Mourt’s Relation.  Version from  Google Books.

About This Blog: Copyright Information

Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog

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

Live with Abundance: Summer of Social Good

I’m just back from our last weekend get-away for the season, in our family camper. What a difference since our visit from more than a month ago, at the height of summer’s ease. Now, the days are crisp, the colors vivid even as the mood turns somber, and the shadows, of course, continue to lengthen. In this reflective spirit, I’m recalling one of the summer’s most buzzed about social media events—Summer of Social Good, presented by Mashable ~  The Social Media Guide, and Social Media for Social Good. Here, I’m hoping to preserve and carry on the energy and commitment from that worthwhile initiative.

To me, summer’s lasting gift is the sense of renewal that invigorates and sustains our efforts throughout the rest of the year. Though one commentator points out that the $55,000 raised for the four chosen causes may not have matched the expectations of the fundraiser’s ambitious announcement, or possibly the stature of its sponsors, we would do well to remember that the seeds planted from this milestone event are still bearing fruit, and that any awareness or funds raised during these hard times is that much more significant. As presenter Beth Kanter noted at the Social Good Conference in New York, “Small actions online and offline add up to make a difference.”

One Fund—Four Charities

According to Mashable’s announcement, the Summer of Social Good (which ran from June 1st till August 28th 2009) represents “the first large scale online charitable campaign to raise funds strictly online through the power of Social Media and the Internet over an extended period.”

The goal is to use the power of “Social Influence” via Twitter, Facebook, MySpace, blogs and other online media to raise an unprecedented amount for our fund, benefiting The Humane Society, LIVESTRONG, Oxfam America, and WWF. We are very excited to engage and encourage online communities to truly do something remarkable.

The Social Good Conference

The Social Good Conference, a one-day educational event celebrating the finale of the Summer of Social Good charitable campaign, was held at the prestigious 92nd Street Y in New York City, on August 28th. Mashable’s sponsors, Zappos and MailChimp, donated 100% of all ticket sales to the Summer of Social Good non-profit fund.

The conference featured presentations from well known and respected organizations and professionals within the space focused on “Social Media for Social Good,” including keynotes from Facebook’s Randi Zuckerberg and All For Good’s Jonathan Greenblatt. Thanks to Livestream, if you couldn’t make it to New York City, you can still view the conference videos.

How Nonprofits Can Use Social Media

According to the conference bio, presenter Beth Kanter, is “the author of Beth’s Blog, one of the longest running and most popular blogs for nonprofits. In 2009, she was named by Fast Company Magazine as one of the most influential women in technology and one of Business Week’s ‘Voices of Innovation for Social Media.’ She is the 2009 Scholar in Residence for Social Media and Nonprofits for the Packard Foundation.”

Kanter describes the Social Good Conference, in her excellent post, Reflections from the Mashable Conference. Especially helpful is Kanter’s summary of keypoints from Randi Zuckerberg’s opening keynote, on how people are using Facebook for online activism, as well as how nonprofits are using it for fundraising.

In her own presentation on how nonprofits can use social media, Kanter describes how she uses her passion for blogging and teaching to raise money online to help children in Cambodia. Specifically, she describes how her blog, a related wiki, the ChipIn Widget, and Twitter help her to fundraise. “Twitter is amazing fertilizer, and our tweets are seeds,” she explains.

Kanter’s inspiring presentation. “Be a generous geek–who uses social media for good” describes that “the 3 Rs remain the same: Relationship-building, Rewards, and Reciprocity.” She also refers to leveraging your social graph, according to the Archimedes Principle, described in New York Times bestsellerTrust Agents (see Kanter’s related post, Using Chris Brogan’s Archimedes Principle To Leverage Nonprofits on Twitter Suggested User List).

About This Blog: Copyright Information

Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog

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.

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

Note From Peg:
The following post, by Jennifer Bechard (available at Jenn.Bechard@gmail.com), is the first 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 describes how 343 people turned out on August 2nd to walk for a cure.

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

Impacting Lives Together


3rd Annual Detroit Hydrocephalus WALK

On August 2, 2009, 343 people gathered at Rotary Park in Livonia, MI. Each year, we come together as one to raise hydrocephalus awareness and funds for research. I am the CO-Chair of the Detroit Hydrocephalus WALK in MI, and I have had the privilege to take part in this powerful movement. I have watched our WALK grow into an inspirational event, impacting lives throughout my community.

No Cure, Great Uncertainty

There is no cure for the neurological condition known as hydrocephalus, and the only treatment is brain surgery. Hydrocephalus is a lifelong battle that can be physically and emotionally draining on a person and loved ones. From my personal experience with hydrocephalus, and my countless days spent in the hospital, I have been able to witness the daily struggles others have to endure. A life with hydrocephalus means your future is uncertain, and many live in constant fear of what is to come. Will I make it to my next birthday? Can I overcome the pain? These are just a few questions we ask ourselves.

Sunday August 2, 2009 ~  A Common Goal

On Sunday August 2, 2009, fears turned into a glimmer of hope for a brighter future. There is nothing better in life than seeing that smile appear upon a child’s face when they realize there are others like them–that they are not alone. Children, adults, and families felt comforted being able to share their stories with people who truly understood what they were going through.

We had 16 individuals with hydrocephalus at our 3rd Annual Detroit Hydrocephalus WALK. Ages ranged from 1 years old to 60, and conditions were congenital hydrocephalus, all the way to normal pressure hydrocephalus, NPH. No one’s story was the same, but we all had one common goal for this very special day. Our purpose was to educate others, bring awareness to our community, and help raise funds for research.

Making a Difference

On Sunday morning the sun was shining; we couldn’t have asked for a more beautiful day. As I stood on the tennis court looking out to the crowd of people gathered for the opening ceremonies, I couldn’t believe my eyes. We were rallying together, and we were making a difference. On this special day, we put aside any negative aspects of our lives and focused on bettering the lives for the future people affected by hydrocephalus. This inspirational day really puts life into perspective.  In that moment, nothing else mattered.

Isaiah and Kadyn: Beating the Odds

There was one specific part of the day that stands out the most to me. I was holding Isaiah Harpster for a picture. Before Isaiah was even born, his parents, Evelyn and David, were told there was a slim chance their son would live a long healthy life. The doctors told Evelyn and David there was no hope or reason to even go through with the pregnancy. But from day one, the Harpsters loved their son and had no doubt in their minds that they were going to have him, no matter what his life expectancy was.

The Harpsters have been a part of the Detroit Hydrocephalus WALK since our first event held in 2007. We have been lucky enough to watch Isaiah grow into a strong, determined boy. As I held Isaiah for a picture, he suddenly began to count, “One, two, three, four”–tears filled my eyes. I couldn’t believe what I was hearing. Was this happening? A boy who wasn’t supposed to live was beating the odds and proving his doctors wrong. Isaiah is living proof that miracles happen every day. He is showing all of us that no matter what we are battling in life, we can “beat the odds,” with our loved ones surrounding us.

Another child who captured my heart at the WALK was baby Kadyn. Kadyn was born with severe congenital hydrocephalus, two holes in his heart, seizure disorder, and a cyst on his left kidney. Kadyn’s mother, Sara Inman, found out about Kadyn’s condition at 22 weeks pregnant. Rather than giving up, Sara made a decision to not give up and fight for her soon to be son. Sara has passed on her courage to Kadyn.  At not even 2 years of age, Kadyn has already undergone 11 surgeries. When doctors wanted to give up, Kadyn stuck it out. He is not willing to give into hydrocephalus. Sara says, “If it wasn’t for Kadyn, she would have never made it this far.”

Deserving More Than Quick Fix Treatments

Children like these two boys are perfect examples as to why we should not settle for a treatment that is just a “quick fix.” This is not good enough; no one should ever have to undergo multiple surgical operations and daily chronic pain.  We deserve a better life.

When my mother, Denise Bechard (available at DJBhydrowalkMI@gmail.com), started the 1st Annual Detroit Hydrocephalus WALK, our main goal was to educate others and raise awareness. (For a glimpse of inspirational past walks, see these videos from 2008 and 2007). But this WALK has grown into something much deeper. We want to support others.

I am sharing my journey with hydrocephalus to show others that we cannot let hydrocephalus, or the lifelong pain that comes along with it, beat us, or take over our lives. We can and will defeat hydrocephalus. Along with the Hydrocephalus Association, we will continue to strive to bring this neurological condition to the forefront of public attention. Each step we take on WALK day is bringing us closer to a much-needed cure.

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.

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

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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.