Hydrocephalus Association WALK and Special Event Partner Profiles

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The Hydrocephalus Association (HA) proudly introduces you to some of our outstanding volunteer leaders – the 2011 WALK and Special Event Chairs!  These men and women spend countless hours coordinating HA WALKs and special events in their communities.  They possess great leadership, passion and initiative which in turn allows HA to increase its investment in education, support and research. We plan to feature these exceptional volunteer partners over the next several months, giving you the opportunity to get to know them.

SarahAnn Whitbeck – Chair, Salt Lake City WALK

SarahAnne WhitbeckIn 2002 I was diagnosed with hydrocephalus and had a shunt placed within the same day.  Since that time I have undergone 2 shunt replacement surgeries due to shunt failure/malfunction.  As soon as I was diagnosed, I wanted more information about what to expect regarding long-term plans, including having a family, subsequent surgeries, potential complications, and research for improvements.  I found the Hydrocephalus Association and appreciated their commitment to help people in situations similar to mine who are looking for answers.  After being approached to help with the Salt Lake City WALK, I decided that I had an obligation to utilize resources available to me through personal and work relationships to raise money for the Hydrocephalus Association.  I hope my contribution to this important cause will help further the work of the Hydrocephalus Association and support their valuable mission.

Miaja Rocciola – Volunteer Co-Chair – San Francisco WALK

Maija RocciolaMy family and I have been participating in the Hydrocephalus Association San Francisco WALK for 15 years. My oldest daughter (who was diagnosed with hydrocephalus in utero) was only 10 months old the first year we participated. We pulled her in a red wagon and she slept the whole way! She will be 16 years old this October and has had 8 surgeries during this time. We know first-hand the challenges that people face with hydrocephalus and we are dedicated to the mission of eliminating those challenges. Participating in the WALK every year helps my family and I make a difference and to actually hope for a cure. This year we are hoping to help raise more money for research by increasing the Family Team participation in the WALK. The WALK is not only for raising money and awareness, but for social connections. The friendships that our family have made over the years have been invaluable. I look forward to the WALK every year because it is such a positive, fun-filled day of hope and love!

Jenna Ellis – Volunteer Co-Chair – HA Detroit WALK

Jenna EllisThis is my first year as a Volunteer Co-Chair for the Detroit Hydrocephalus WALK.  My inspiration is my sister-in-law Jennifer Bechard, who was diagnosed with hydrocephalus at the age of 10.  She has undergone 91 surgeries due to shunt malfunctions, but her motivation and smile makes me so proud to work side by side with her. Jennifer is the definition of a person that does not let her condition control her. Not only does she run the Detroit Hydrocephalus WALK with me, but she also is very active in our support group and recently took a job with the HA as their support liaison. No matter how busy she is or how she is feeling, she is always there for anyone that needs her. In just the past few months, I have enjoyed the volunteer work I have been doing for the HA so much, that I am interested in doing this work for a living after I graduate from college. Non-profit work is so fulfilling and the Hydrocephalus Association consists of so many amazing volunteers that remind me every day that we are a part of something wonderful and I have no doubt that we will continue to grow and  create awareness for hydrocephalus all over the world.

Sarah Billman – Volunteer Chair – HA Columbus, IN WALK

Sarah BillmanWhen I was 18 weeks pregnant with our first baby my husband, Joshua, and I went in to determine if we were having a boy or a girl.  It could not be determined that day what the sex of our baby was, but it was clear that something was not right.  I was sent to see a specialist.  Who would have known that our lives would be forever changed by that visit?  It was determined that we were having a girl, Mya Elizabeth.  However, it was also determined that our little angel had hydrocephalus.  In a matter of an hour we had information overload.  I remember sitting there with my husband in a trance listening to the genetic counselor as tears ran down my face.  Surgery immediately following Mya’s birth, a shunt, learning disabilities?  What went wrong?  Mya is now four years old and is the most amazing little girl I know.  She underwent her first shunt surgery when she was 2 ½ months old.  Mya had her first shunt infection not even three months later.  To date Mya has had eight surgeries related to her shunt.  But, after all she has been through, Mya is always smiling.

In the four years that we have had our Hydro Girl I am still amazed by how few people know about hydrocephalus and what it is.  After the rough summer Mya had last year I decided as her momma that I was bound and determined to do what I could to help spread the word.  I first contacted the HA about any WALK’s in Indiana, but unfortunately there weren’t any.  After talking with my husband and my sister, Elizabeth (Co-Chair), I decided that I was going to be the volunteer chair for an HA WALK in Columbus, Indiana.  My goal is to spread the word about hydrocephalus and to get as many people involved as I can.  This is the first year for our WALK in Indiana, but I know it is going to be a great success.  My family is working to help spread awareness not only for Mya, but for the millions affected by hydrocephalus.

Jenifer Jeans – Volunteer Chair – HA Connecticut WALK

Jenifer JeansIn 1978 my mom Andrea, already a mother of two sons, and my father welcomed my identical twin sister Alexandrea and me into the world.  Alexandrea was born with severe hydrocephalus and has struggled with this condition for 33 years.  Since birth Alexandrea has undergone over 20 shunt revisions as a result of hydrocephalus.  I have been at my sister’s side throughout our life, holding her hand the entire time.  When we reached adolescence, and continuing into adulthood, I realized that there were not many individuals who knew what hydrocephalus was or how to help those who live with this condition.  With this realization I decided that I needed to tell my sister’s story and bring awareness to the issue.  Alexandrea is truly my inspiration.  She has fought long and hard and is truly a miracle.  Throughout her struggles she has always continued to smile;  Alexandrea has never given up – not once; she continues to fight when many individuals would just give up.  There have been many physicians who have insisted Alexandrea was not going to make it, yet she did.  Alexandrea has shown me that life is truly precious and it is something that we should never take for granted.

It is my hope that starting a HA WALK in Connecticut will encourage others to tell their stories, while raising awareness and money to find a cure for hydrocephalus.  With guidance and support provided by HA’s national office as well as family and friends, I hope our inaugural WALK in Connecticut will be a tremendous success.  Although chairing a WALK is not an easy task, it is truly a labor of love for me.  In my heart I know Alexandrea (who is unable to speak for herself) is truly overjoyed that I have taken on this endeavor, and I know she wants her story, as well as other individual’s stories, told.  It is my hope that one day there will be a cure, and no one will need to know what hydrocephalus is.

2 Comments for : Hydrocephalus Association WALK and Special Event Partner Profiles
    • Jenifer Jeans
    • August 25, 2011

    Hey I am the walk chair for CT and I must make a comment. All of the above individuals are so amazing. Their strength and determination inspire me. Alex has had over 91 surgeries as well and it is so hard, however she continues to amaze everyone every day. My god bless all of the walk chairs as well as their families

  1. Reply

    I developed hydrocephalus when I was 10 year old. It was 1968. When my symptoms began my parents immediately got my to the correct dr’s. where we were given the diagnosis. I underwent to required surgery and returned to school after several months of recovery. I never experienced any complications or problems. We all thought I was fixed.

    When I was 46 my my symptoms of hydro returned. Once again I went to a neurologist who told me that my shunt had disintigrated, it was so old. Once again, I underwent surgery and was released from the hospital after 1 day. What a difference.

    11 months later, while hiking, I experienced an “acute shunt malfunction”. I didn’t know what was happening but luckily my husband got me to the hospital quickly and my doctor performed an emergency surgery and “fixed” the shunt. I learned that things can go from good to bad really fast.

    Luckily I found the Hydrocephalus Association who taught me a lot. Since then, I have learned to be more aware of symptoms.Ultimately, I have been very lucky, only 3 surgeries and several adjustments over a 43 year period.

    And that is why I am the Phoenix CoChair, to teach others about hydrocephalus. And the Walks are just fun.

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