Announcing Our 2017 Hydrocephalus Association Scholarship Recipients!

HA funds a record number of 31 Scholarships thanks to the Abbene Family!

Abbene Family awards $20,000 in scholarship awards to celebrate 15th year of the Anthony Abbene Scholarship Fund (Photo of Anthony Abbene and his mother Margaret)

We are pleased to announce the 2017 Hydrocephalus Association Scholarship Award recipients.  Thanks to the support of the Abbene Family, we received an additional grant of $20,000 to offer more scholarships and ensure that each recipient receives an award of $1,000 minimum.  In addition, 2017 marks the 23rd year of the HA Scholarship Program and we are very proud to honor 31, a record number of incredible young adults with these awards. Despite the challenges and obstacles of having hydrocephalus, these future young leaders of our community are able to further their education, help their community and inspire others.

We are thankful for the following scholarship funds that were established to support this effort: Gerard Swartz Fudge Memorial Scholarships, Morris L. and Rebecca Ziskind Memorial Scholarships, Anthony Abbene Scholarship, Justin Scot Alston Memorial ScholarshipMario J. Tocco Hydrocephalus Foundation Scholarship and the Myles Chamberlain Scholarship.  The 2017 scholarship cycle also marks the introduction of two new scholarships courtesy of the Baldus Family Scholarship in Memory of Gerard Swartz Fudge Fund and the Kate Finlayson Memorial Scholarship Fund.

Our gratitude is extended to all the funders for their generosity and the Scholarship Committee for all their support and dedication.

We want to extend a special thank you to the Anthony Abbene Scholarship Fund for their support.

Congratulations 2017 Scholarship Recipients!

Joseph Harris

Recipient of the Gerard Swartz Fudge Memorial Scholarship

“Hydrocephalus is not a curse, but rather is a blessing in disguise. It has allowed me to find a purpose in life and an opportunity to change those around me”

Joseph will take a major step toward his purpose when he begins his freshman year at Marquette University in the fall of 2017, with plans to pursue a career in the medical field. “Once a patient, I am now striving to become a medical professional to treat children like me with hydrocephalus”. If his high school achievements are any indication then he should have no problem achieving his goals. He was an A-Honor Roll Student, a four year varsity tennis player, captain of the tennis team in his junior and senior years, student council representative, National Honor Society member and an Illinois State Scholar. Arguably the most impressive of all his achievements is that his family has annually lead a HA WALK team since 2007 that has raised over $119,000.00 in donations. “I am a kid with hydrocephalus. I was the twelve year old patient in the hospital who needed eight neurosurgeries. However that is not all that I am”

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Delaney Lee

Recipient of the Anthony Abbene Scholarship

“I don’t always take the same route as everyone else, but I manage to end up in a place that’s right for me”

Currently, the right place for Delaney is the University of Texas where she will begin her freshman year in the fall of 2017 and study Applied Movement Science. “After receiving my bachelor’s degree I would like to work in a hospital setting as a Child Life Specialist while applying to various occupational therapy programs in Texas”. Delaney wants to help children using water therapy and hippotherapy. Delaney’s motivation to help children comes from her own personal experience. She was born premature with hydrocephalus and weighed only 3 lbs. She had a shunt implanted and has endured 30 surgeries since birth. “I don’t like to think of this condition as something that labels me. It is an essential part of me only because I would not be me without it for lots of reasons. What I have gone through allows me to see the very best in people.”

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Leia Martinez

Recipient of the Baldus Family Scholarship in Memory of Gerard Swartz Fudge

“After having this experience (hydrocephalus diagnosis) I have learned that we have to fight for ourselves”

Fight for herself is exactly what Leia did during her sophomore year at the University of Puerto Rico when her hydrocephalus was diagnosed. During her freshman year, she began to experience dizziness and balance impairment. When she shared her concern regarding her symptoms with others, they assured her that it was simply due to the stress of her undergraduate studies. For the longest time, she believed them. During her sophomore year she began to experience short term memory loss and confusion. She would get lost in familiar places on campus and she was soon on the brink of an emotional breakdown. She considered abandoning her undergraduate studies because her grades were suffering, but as a last ditch effort, she consulted a psychiatrist who was confident that her symptoms were due to anxiety. Despite her psychiatrist’s assertions, Leia insisted on having an MRI. After the MRI, she was properly diagnosed with congenital hydrocephalus caused by aqueductal stenosis. From there she went to see her neurosurgeon and scheduled an Endoscopic Third Venticulostomy (ETV). After failing two classes the year prior to the diagnosis, the symptoms were now alleviated and she was eager to resume her studies. Leia eventually obtained her Bachelor of Science degree in Molecular Biology, but she isn’t stopping there. “I aspire to be a professional capable of communicating with scientific leaders…I want to spread the word about infectious conditions that can eventually result in hydrocephalus such as meningitis and help promote and develop new drugs to help with these infections and avoid hydrocephalus. I’m positive that getting an MBA in Healthcare and Pharmaceuticals is the next logical step in my career.”

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Molly Perdek

Recipient of the Morris L. and Rebecca Ziskind Memorial Scholarship

“Hydrocephalus has taught me that a life filled with challenges leads to more opportunities”

Molly has taken full advantage of her opportunities. “I have been blessed…to make amazing connections during my many stays in the hospital”. Her many stays in the hospital or “opportunities” as she perceives them, were due to 12 shunt revisions, 7 full replacements and a dual craniotomy leaving cranial windows for pressure. The connections she has made include The New Jersey Devil’s Professional Hockey Team for which she serves as a volunteer within their community outreach program. She serves as a peer mentor to another hydrocephalus patient, has chaired several fundraising events for Make a Wish of New Jersey and represented the Hydrocephalus Association when her local Police Department held a fundraiser in her honor. What makes her accomplishments even more impressive is the fact that after her very first surgery at birth, she had no further complications until she was 12-years-old, which means that18 surgeries took place within a relatively short period of time. Those “opportunities did not prevent her, along with her Mother, from assisting with the planning of the very first WALK in her hometown of Basking Ridge, NJ. “I also organized a team and we raised close to $5,000” This scholarship award may only be a fraction of what Molly has already contributed to the hydrocephalus community, but it will help pursue her degree at the College of Charleston, where we are confident that she will continue to positively impact the community and serve as an inspiration.

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Hannah Selden

Recipient of the Mario J. Tocco Scholarship

“Hospitals comfort me & make me feel most at home and I know this is because of how often I’ve had to visit them due to my hydrocephalus”

Hannah’s comfort level with hospitals is partially responsible for her career goal of becoming a neurosurgeon. “Being a neurosurgeon was my dream since I was a child.” She realizes that it is a lofty goal that will require much dedication, but she has never been one to settle for less. When her parents refused to allow her to participate in contact sports she began swimming in the ocean at the age of three. Her parents, sensing her determination, enrolled her in swim classes. Later on, she taught herself how to draw and participated in annual art camps for three years. Hannah will take the first step toward her goal of becoming a neurosurgeon when she enters South Dakota State University in the fall to study Nursing and then matriculate into medical school. Hannah has never been able to participate in Hydrocephalus Association activities because she lives in a small community in Alaska. She just recently learned about HA and stated “How amazing it must be to be included in an entire community of people who experience hydrocephalus”. We’re confident that as a neurosurgeon, Hannah will eventually make a tremendous contribution to the hydrocephalus community. Perhaps membership in the Hydrocephalus Association’s Medical Advisory Board is in her future. “Despite the negative impact that hydrocephalus initially had on me, overall, everything I’ve been through can be seen as incredibly lucky and positive. Without neurosurgery, I wouldn’t be here today and I definitely wouldn’t be the person I am, either. I wouldn’t know exactly what I want to do with my life”

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Jamie Wright

Recipient of the Anthony Abbene Scholarship

“Volunteering is truly my favorite, and most rewarding, pastime. It is important to me that my service activities build on my passions”

Fortunately for us, as someone who was diagnosed with hydrocephalus as an infant, Jamie’s passions include hydrocephalus. Most of her current volunteer work is with the Hydrocephalus Association. In 2013 she started the Houston Community Network and still serves as the Chairperson. She has also volunteered with the Houston WALK in various capacities, but her volunteer work has not impeded her academic achievement.  She has already obtained her Bachelor of Science degree in Molecular Biology with a minor in Neurobiology. She is currently in her sixth year of a combined MD-PhD degree program at the University of Texas Health Science Center McGovern Medical School in Houston. Her long-term goal is to do a residency in pediatric neurology after completing her MD and PhD. She ultimately plans to pursue a career at an academic institution where she can be a practicing physician while conducting clinical and translational research. “I am interested in investigating the etiology and long-term neurological effects of post-hemorrhagic hydrocephalus and potential preventative therapies”.

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Diane Bojarcik

Recipient of the Kate Finlayson Memorial Scholarship

“Eventually I would also love to become a published children’s author. I have been working on a story for the past couple of years where the protagonist is a little boy living with Hydrocephalus.”

Diane is well on her way to realizing her dream of becoming a published children’s author, having already graduated Magna Cum Laude from Mount Saint Mary’s University with a Bachelor’s Degree in Elementary Education and a minor in English. She is currently pursuing a Master of Education Degree in Reading with a Reading Specialist Certification and plans to pursue a doctorate in Education. “I want to open my own Reading and Math clinic where I can offer access to Reading Specialists, Math Specialists, and tutors all in one place.” Diane does not feel that her struggles with hydrocephalus have been as severe as others, but did feel that she had to learn “differently”. Her struggles with math and experiences with teachers who did not understand her struggles strengthened her resolve. “I was determined to overcome my struggles and become the best teacher I could be to my future students. I did not want children in the future to suffer from the same struggles as I did growing up. I wanted the future children, who struggled with learning, to understand in ways that my teachers growing up never understood. I wanted to ensure that no one else was told they could not accomplish what they wanted in life just because of some who doubt their abilities.”

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Sarah Buffa

Recipient of the Morris L and Rebecca Ziskind Memorial Scholarship

“I want to advocate for people with disabilities”

Sarah will not only be able to advocate for people with disabilities, but when they learn her story, she will also be able to inspire people with disabilities. “My sister has been the Co-Chair of the HA WALK for many years and I assist her and help at the WALK. I have volunteered all my life; my family does not believe in feeling sorry for yourself.” Since she was beset with migraines if she took more than two courses a semester, it took her 17 years to obtain her bachelor’s degree. Shortly after graduation she realized that her true passion was advocating for those with disabilities. She is currently pursuing a Master’s Degree in Social Work at the University of Missouri-Saint Louis. “I have a passion for anyone with disabilities. Coming to this realization, however, required many years of college and a completely different degree.” Sarah’s passion was cultivated by her taking charge of her own struggle which includes 32 brain surgeries and a brain injury at the age of 14. “I started cross stitching after my brain injury as a type of therapy, then I moved onto knitting baby blankets. I make these blankets for family and friends who are having babies” She also takes Taekwondo to improve her balance. She is not waiting until she obtains her master’s degree to begin her advocacy as she has already attended HA Conferences, addressed medical students at Washington University and met with Missouri Legislators. “I will advocate for people with disabilities in Jefferson City and beyond, as necessary. I will fight to help people with disabilities obtain jobs and the healthcare that they have a right to. I will step up to the plate to be an advocate of anyone who does not have a voice. I believe God gave me my voice and health back to help others and that is what I plan to do.”

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Haylee Chiarello

Recipient of the Anthony Abbene Scholarship

“I would hope to inspire other patients with hydrocephalus by sharing my incredible story.”

Haylee’s story is indeed, incredible. In January of her freshman year in high school she went to the clinic for a routine eye exam. The optometrist observed extremely high pressure on her optic nerves. Fearing vision loss, the optometrist referred her to another local physician for several tests. These tests failed to reveal any issue with her eyes which lead to confusion for Haylee because she had no symptoms to indicate any problems with her health. An MRI revealed a congenital defect in her brain requiring emergency surgery. The diagnosis was hydrocephalus. She was expected to go home the night following the surgery, but became very sick. After a longer than expected hospital stay she was finally able to return home, but the recovery process was far from over. For a while she could not walk without assistance. Talking became a struggle. School work was now difficult because her thinking was confused and disorganized to the point that she had to repeat the 9th grade. With determination and a math tutor, she was able to work her way back academically and make up for lost time with a slew of extracurricular activities. “I have been called a miracle. I call my experience a gift. It is not something anyone would want at all. Some might call it a tragedy. To me, this is an amazing victory!” She became an award-winning baton twirler, eventually being selected as a featured twirler at the University of Central Oklahoma, performing before huge crowds. Not only is she a featured baton twirler at the University of Central Oklahoma, but she also took courses there and at the University of Oklahoma while still attending high school. In addition, she plays the piano and does gymnastics and dance. In the fall she will enter the University of Oklahoma and major in Native American Studies with a minor in Piano. An enrolled member of the Cherokee Nation, her goal is to matriculate into the University of Oklahoma College of Law to study Native American Law. Her ultimate goal is to seek public office as either an Oklahoma State Legislator or Tribal Official. “I will work creatively to be a leader and help address health and wellness issues in the Native American community. The need in our community for leaders to help address health issues is personal for me”

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Nathan Frick

Recipient of the Justin Scot Alston Memorial Scholarship

“I never felt much different from other kids my own age and I have always lived as though my hydro diagnosis didn’t have to define me”

Nathan actually is different from kids his own age, not because he has hydrocephalus, but because of his musical talent. He plays the alto saxophone, baritone saxophone and sings in the school choir, church choir and community theater. He has also acted in his school musical for the past three years. Nick will enter Ouachita Baptist University in the fall of 2017 to major in Musical Theater. “This will be a big change to live away from home and friends. Not only am I leaving my family, but my neurosurgeon who has cared for me since birth. That will be another difficult transition.” Upon completion of his college education Nick wants to compose and conduct music and eventually perform on Broadway. He realizes that he is up against long odds trying to be successful in show business, but beating the odds is nothing new for Nick. He was born eight weeks premature and not expected to live due to a severe brain hemorrhage. The brain bleed subsided, but he was still battling kidney problems, a heart murmur, blood sugar issues, irregular blood pressure and a possible cerebral palsy diagnosis. He received his hydrocephalus diagnosis at four weeks old and received a shunt at six weeks old. At the age of three his heart murmur was cured, but he would endure several shunt revisions and eye surgeries. Nick and his family have always sought comfort in their faith to alleviate fear and uncertainty. When referencing a surgery he had to have at the age of 14 on Friday prior to Easter Sunday, Nick stated “This experience was a challenge, but it was tiny compared to the sacrifice Jesus made on the cross that Good Friday”.

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Jeff Horbatiuk

Recipient of the Gerard Swartz Fudge Memorial Scholarship

“I started getting involved in helping others with hydrocephalus after my twenty third revision”

Immediately before Jeff’s surgery which took place during his junior year in high school, Dr. Carolyn Harris approached his family about using Jeff’s data in her studies. Despite having already received his anesthesia for his surgery, he began telling Dr. Harris about his school Chemistry research project. In doing so, he made such an impression that Dr. Harris offered him a volunteer position in her lab to conduct research on shunts and hydrocephalus. Approximately two months following surgery, in March of 2016, he contacted Dr. Harris to propose creating a new polymer that could adhere shunts together better than current sutures and break down less in the body, preventing cell adhesion to the shunt. Jeff did not stop there. He created a working model of his concept and presented it to Dr. James P. McAllister II. Most people his age would have been satisfied with that accomplishment, but Jeff’s research is ongoing. His most recent project involves evaluating shunt failures due to immune responses through a process called immunofluorescence microscopy. In the fall of 2017 Jeff plans to enter Wayne State University to study Chemical Engineering. His goals are two-fold “I want to create one product that will revolutionize the world…make something that will aid as many helpless people as possible” and “Teach as much of my future knowledge as possible to other scientists.”

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Bryanna Egan

Recipient of the Anthony Abbene Scholarship

“I have an IEP in place since I was in pre-school helping me with my impairments…I excelled, winning awards in elementary, middle and high school for my endeavors. I am enrolled in Honors and AP Courses”

Bryanna’s story is proof positive that the requirement of an IEP does not necessarily relegate a student to academic mediocrity. Certain concessions may need to be made, but in many instances, the student can still excel as Bryanna did. As a result of hydrocephalus, she has a shunt, cerebral palsy, left side hemiplegia, aphasia and chronic pain in her back and left leg. Bryanna was unable to participate in physical activities as a child. She wanted to join the cheerleading squad in elementary school, but was not allowed to do so because she was seen as a liability. She was not even allowed to participate in her own physical education class. She was required to “dress”, but forced to simply watch her classmates participate. “I felt like a social outcast. I just wanted to belong in school”. Instead of drifting into the abyss of apathy, Bryanna channeled her frustrations into the pursuit of academic excellence and community service. “I challenged myself. I am also fortunate to be able to participate in my community through volunteering.” Bryanna is going to take that same commitment to academic excellence and community service into the College of Southern Nevada                     this fall as she pursues a double major in Criminal Justice and Computer Science. “I have a profound interest in law and our criminal justice system. I hope to become an effective member of the FBI or other governmental agency to protect and serve our country and citizens.”

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Sara Ellis

Recipient of the Anthony Abbene Scholarship

“I have made it my mission to spread awareness of hydrocephalus, in the written word…I’ll be able to help somebody understand this condition, who may be newly diagnosed or a parent looking for answers”

Sara is doing just that, spreading awareness via her writing. At the age of 14 she published her first novel Love Me Always. Two years later, she published her second novel When is Right Wrong? One may expect that a novel written by a 14-year-old would address typical pubescent subject matter, but Love Me Always is about a soldier serving in the Vietnam War who falls in love with a hippie in the 1960’s. When Is Right Wrong? also addresses serious social issues. She is currently working on her third novel Now that You’re Gone. “I wanted to talk about hydrocephalus in a book and I did that in this novel.” The plot involves a young lady with hydrocephalus named Talia Parker in 1962. In addition to dealing with hydrocephalus, she is impacted by Cold War conflicts, anti-Semitism and the Cuban Missile Crisis. Sara’s own crisis is what motivated her to address hydrocephalus in her third novel after not doing so in her previous two novels. During her senior year of high school, like most high school seniors, her major concerns were the prom and learning to drive. Although she had raised money for hydrocephalus research with her high school drama club, she wasn’t concerned with her hydrocephalus at all. “In my life I have had a number of shunt revisions, but fortunately had zero recollection of any of the eight surgeries. Hydrocephalus in my mind, had become no different than having allergies or asthma.” That all changed during a routine visit to her neurosurgeon. She discovered that her shunt had been in the process of failing during her entire senior year of high school. She had her ninth shunt revision that summer then began her freshman year at SUNY Old Westbury to pursue a career in law, but her health struggles were not over. She began to experience headaches and was diagnosed with occipital neuralgia, but it did not stop her from continuing her education. “I have learned to cope with my daily headaches…I am thankful I am still the same intelligent girl and I can still spread awareness for something.”

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Emilia Godlewski

Recipient of the Anthony Abbene Scholarship

“Mental health issues affect a large number of people with hydrocephalus. Unfortunately, there are too few mental health professionals who have first-hand experience with the social and emotional issues associated with hydrocephalus and its complications and secondary conditions”

Emilia’s first-hand experiences are her motivation for pursuing a career as a mental health therapist. She has a vast amount of personal experience and practical knowledge of mental health issues. “I don’t share my story often or for pity. However I have learned that sometimes sharing my story and experiences with those who are struggling with mental health and abuse can help them and that I am empowered through helping others.” Emilia’s experiences include being diagnosed with hydrocephalus at 5 months old, anxiety at age four, generalized learning disability at age six, depression at age eight, oppositional defiance disorder and ADHD at age 12, spectrum disorder at age 16, post-traumatic stress disorder at age 18 and bipolar disorder at age 19. She has gone to art therapy, play therapy, water therapy, behavioral therapy, cognitive therapy and family therapy. In addition, she has experienced traumatic brain injury, 35 brain surgeries and still suffers from seizures. Through it all, Emilia managed to graduate from high school on time and transform her challenges into her life’s mission. She currently attends Montgomery Community College in Blue Bell, PA pursuing an Associate’s Degree in Psychology with plans to obtain a Bachelor’s Degree in Psychology. “I am motivated by the desire to help others with hydrocephalus, chronic pain conditions, traumatic brain injury, post-traumatic stress disorder and self-image and substance abuse issues by providing counseling and other mental health services.”

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Amelia Holley

Recipient of the Anthony Abbene Scholarship

“I have learned to turn my weakness from hydrocephalus into my strength. It has caused me more pain (both mental and physical) than I could have ever imagined or described, but brought unimaginable joy into my life”

How can something that has caused so much pain also bring much joy? Perhaps it’s because Amelia is an aspiring singer-songwriter. As is often the case with great artists, they channel their struggles into their most poignant forms of artistic expression. When legendary singer-songwriter James Taylor’s longtime friend committed suicide, he chronicled his anguish in his signature song “Fire and Rain”. Another legendary singer-songwriter, Jim Croce, documented his despair about a lack of quality time with his family in his classic “Time in a Bottle”. Finally, when future legendary singer-songwriter, Amelia Holley, was experiencing severe pain from headaches, she wrote what she believes to be one of her best songs, No One to Save Me. “I wrote it at a time in my life when I was experiencing severe and constant headaches…I wrote it to describe how I felt”. In fact, Amelia credits her experience with hydrocephalus, which includes 58 brain surgeries, with providing her with the subject matter for all of her songwriting. She suffered a stroke in 2016, causing her days to be dominated by physical therapy, but she still tries to play the guitar on a daily basis. Her stroke also caused her to delay her college entrance for a year, but this year she will matriculate into Oglethorpe University and pursue a discipline that complements her goal of becoming a successful songwriter “I am considering literature and business, as well as a minor in French” She had planned to attend Belmont University in Nashville, TN prior to her stroke, but felt that it was important to attend college close to home for her undergraduate degree. Belmont University is still in her plans for graduate studies. “I plan to attend Belmont to pursue a Master’s Degree in Music/Music business which will not only help me master the craft, but also provide contacts in the music business”.

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Gabrielle Zeger

Recipient of the Anthony Abbene Scholarship

“I feel that the criminal justice system automatically places minorities at a disadvantage, and as the world’s largest minority, people with disabilities are more susceptible to unfair treatment by police officers, prison wardens, judges and juries”

When Gabrielle references people with disabilities and the criminal justice system, her focus is on both physical and mental disabilities. “I refuse to participate in a system where a police officer can shoot a caretaker who was attempting to protect his patient with Autism.” So in the fall of 2017, Gabrielle will begin her studies at Cornell College where she will take the first step towards improving the current criminal justice system by pursuing a Bachelor’s of Special Science in Criminal/Deviant Behavior. “This degree will assist me in in the fulfillment of my dream of decreasing the recidivism rate and ending the school to prison pipeline.” Due to her prenatal hydrocephalus diagnosis and cerebral palsy, Gabrielle has experienced first-hand how society can be unfair to those with disabilities. When she entered kindergarten, for the entire first semester, a boy in her class would kick her lofstrand crutches when she ran and played with friends, causing her to fall. This early experience made her keenly aware of the physical and mental challenges that separated her from her classmates, but instead of retreating, she educated her peers. In the third grade she did a presentation on “Why I Walk with Crutches” because of a classmate’s disparaging remark. She has been involved with Miss Amazing, a pageant for girls and women with disabilities, since 2009. After serving as Miss Amazing Preteen Nebraska for two consecutive years she continued to work with the pageant. Those early experiences with cruel peers could easily be dismissed as the typical behavior of immature children who did not know better, but Gabrielle still feels that society, in general, views people with disabilities as useless and that belief has provided her with her life’s mission “I consider myself an advocate for people with disabilities.”

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Dominic Acri

Recipient of the Anthony Abbene Scholarship

“My professional aspirations are to pursue hydrocephalus research. With a doctorate in neuroscience, which would include a background in clinical research specific to rare and neglected diseases, I would be able to merge my interests in the nervous system and my own experiences as a person with hydrocephalus”

Dominic is well on his way to realizing his professional aspirations and very possibly helping the Hydrocephalus Association realize its vision. He’s currently in his third year at the University of Notre Dame majoring in neuroscience and behavior and is in the process of completing applications for neuroscience Ph.D. programs at Harvard University, Columbia University, University of Chicago and others. “My research interests lie mainly in mammalian behavior and its implications for the spread of vector-borne diseases and environmental conservation efforts.” One may assume that someone with such lofty aspirations in academia and research would only be able to meet his goals via a singular focus on neuroscience, but that is not the case with Dominic. He is also committed to social change. “I spend my time…pursuing social advocacy” Dominic holds leadership roles in campus clubs that are committed to intercultural dialogue, racial equity and LGBTQ rights. Dominic was diagnosed with hydrocephalus as an infant and experienced his first adversity due to hydrocephalus as a 7th grade student. His struggles included multiple surgeries, headaches, the search for the proper shunt setting etc. As opposed to being discouraged, hydrocephalus set him on a path towards his career goals. “I began to appreciate the science behind hydrocephalus and everything clinicians had done…I would not be the person I am today without hydrocephalus.”

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Mckay Boyack

Recipient of the Anthony Abbene Scholarship

“I love to help and serve other people”

That love is so strong that it compelled Mckay to postpone her educational pursuits after just one year of study at Brigham Young University-Idaho to serve a full time mission for the Church of Jesus Christ of Latter-day Saints. She served in the North Dakota Bismarck Mission and served in various leadership positions. “From my mission, I have learned much about how to push through my trials to fulfill a greater purpose, as I continue to struggle with decreased stamina and headaches that have accompanied hydrocephalus.” Mckay returned to school in the summer of 2017 to study Family Life in preparation for a career in social work or marriage and family therapy. Mckay has had a shunt for as long as she can remember and has always had compromised motor skills due to hydrocephalus and Dandy-Walker Syndrome. While her physical abilities may have been limited, she experienced no cognitive impairment, graduating 2nd in her high school class and pursuing service that is suited to her abilities “Serving in nursing homes gave me an opportunity to look beyond myself and give of my time and efforts to serve those around me. While the service I rendered was not physically demanding, it helped me learn about how to form relationships with and show compassion for everyone I meet.”

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Kiana Brown

Recipient of the Anthony Abbene Scholarship

“I want to let people with hydrocephalus know that they are not alone and that they can look to me for guidance”

That guidance includes participating in the HA WALK for the past three years where Kiana has not only raised money with the help of family and friends, but enjoys the fellowship with the hydrocephalus community. “I have enjoyed getting together with the many others who have hydrocephalus”. When Kiana is able to realize her career aspirations she will have a platform to positively impact the hydrocephalus community on a wide-scale. “I will aspire to be a successful blogger for successful companies”. She is already well on her way. She won first place in a writing competition at her school, is currently in the process of getting a book published and she will enter Augsburg College this fall to major in English. As someone who was diagnosed with hydrocephalus at birth and cerebral palsy at the age of two she wants to share her story with the world as a form of motivation. “The book is a reflection of my life in a creative way that will hopefully inspire others to embrace who they are and become very strong and independent individuals”.

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Allison Campbell

Recipient of the Anthony Abbene Scholarship

“I am aspiring to become a pediatric neurosurgeon”

Fortunately, Allison is very comfortable within a hospital setting and it’s not just due to repeated hospital stays as a hydrocephalus patient. “I love to shadow my mentors and observe neurological operations at the UT Hospital in my free time”. In addition, she has played with her school orchestra in area hospitals to entertain the patients, serves as an ambassador for Children’s Hospital, earned a Girl Scout Award building a toy chest with easy-to-disinfect toys and books for a pediatric neurosurgeon’s office waiting room, established an annual supply drive for Children’s Hospital and actually designed a coloring and activity book for young patients. Her extensive list of activities nor her multiple stays at East Tennessee Children’s Hospital have adversely impacted her academic performance as she served as President in the National Honor Society. In spite of everything she does within hospitals, she still used this position to the benefit of hospital patients. “I established supply drives every semester for patients’ families during their stay at ETCH, such as toothbrushes, shampoo, other personal care items, and crayons. I donated over 3,000 items to ETCH through supply drives.” Allison believes that her experience with hydrocephalus has shaped her destiny and determined who she is. That destiny involves designing a shunt made with a new bio-compatible material. “I am more prone to high protein content in my cerebral spinal fluid. This protein build-up has caused several shunt blockages”. That is why she will enter the Tickle College of Engineering at the University of Tennessee to major in Material Science and Engineering. She has also been accepted into the Chancellor’s Honors Program which will provide her with research opportunities. “No matter how great the surgeon’s surgical skills are, the patients’ prognoses cannot be optimized without better treatment equipment. I will apply the knowledge I gain from my degrees in material science and engineering to revolutionize the way hydrocephalus patients live”.

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Cory Cherven

Recipient of the Anthony Abbene Scholarship

“As a child, I was always amused by the concept of having a shunt; I felt as though I were some hybridized robot-human, endowed with a set of unique superhuman abilities that set me apart from the crowd”

If Cory was old enough to remember the television show The Six Million Dollar Man, then he would probably be even more amused by the concept of having a shunt. Although there is no scientific evidence to support the idea of a shunt endowing anyone with superhuman abilities, Cory does possess unique talent. He is a cellist, produces short films and immerses himself in technology. “I love computing and understanding how things work”. His primary inspiration is his Mother, a systems analyst and computer programmer. He was diagnosed with hydrocephalus a few months after his birth. Since his participation in physical activities was limited he was forced to sit at home on his computer, but he takes it all in stride. “Aside from the occasional appointment and gym restriction, life was normal as a growing child”. He even “credits” hydrocephalus with steering him towards his life passions which he will pursue at Canisius College in Buffalo, NY this fall. “Hydrocephalus has brought me closer to the things I love – the arts, technology, and film”.

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Lauren Downie

Recipient of the Anthony Abbene Scholarship

“I have battled guilt over the success of my shunt, but also come to peace with the physiological struggles of headaches and other inconveniences. These resolutions are thanks to the connections from the Hydrocephalus Association”

When Lauren realizes her career aspirations, the help that she received from the Hydrocephalus Association is going to pale in comparison to the help that she is going to provide to the entire hydrocephalus community. She is beginning her fourth year in a five year Masters of Architecture program at the University of Kansas. One may wonder how an architect could positively impact the hydrocephalus community. “Growing up as a child with a chronic condition, I have spent my fair share of time in doctors’ offices and hospitals. After knowing how these offices make a young person feel, I am compelled to enact more sensible designs for such patients. In this way, healthcare design offers an opportunity to affect tangible change in the community. By improving the layout, mechanical functions or daylighting in a medical facility, patients could potentially recover quicker and enjoy a more comfortable healing process”. Lauren is currently on track to become a licensed architect two years after graduation, a process that takes seven plus years for most. Her studies tend to consume her days, but she has managed to integrate some extracurricular activities into her regimen. As President of her sorority chapter, which consists of over 200 members, she often spends evening hours coordinating social activities, executive board meetings or attending collaborative meetings on campus. She also volunteers for various professional architecture organizations such as the American Institute of Architecture Students where she is the Director of their Freedom by Design project. When someone this busy has an opportunity to take a vacation, they usually spend that time strictly pursuing leisure activities, but not Lauren. While on vacation in New York City she participated in an imaging study. “I had a personal investment into their research because I was also curious about the long term effects of shunting and connections to headaches…I would encourage others with hydrocephalus to become active in efforts for research and better treatment by enrolling in studies and trials”

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Emily Gellatly

Recipient of the Anthony Abbene Scholarship

“I love science and having spina bifida and hydrocephalus has made me extremely interested in the brain”

Emily is going to explore her extreme interest in the brain by tackling a double major of neuroscience with a concentration in biology and political science at Westminster College. It will not be her first foray into exploring her interest in the brain. “I participated in the brain bee competition at Northeast Ohio Medical University in 2015 and 2016, placing within the top 10 each time”. The political science component of her impending curriculum probably stems from her belief in advancing the rights of those with disabilities. “I am inspired by the work organizations such as Disability Rights International have done to advance the rights of disabled people in other countries”. Much like her interest in the brain, her impending college curriculum also will not be her first experience in political science. She founded Health Professions Affinity Community (HPAC) in her high school three years ago. HPAC provides students with the opportunity to identify a health disparity in the community and create a project to address it. She even has grant writing experience via her participation in HPAC. Emily does not plan to culminate her studies with a bachelor’s degree. She is going to combine both of her interests and pursue a joint medical degree and law degree with the ultimate goal of becoming an international disability rights lawyer. “I feel privileged to live in a country where I have legislation like the Americans with Disabilities Act and the Individuals with Disabilities Education Act, but I realize that most disabled people globally lack even basic health care”.

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Kyle Hogarty

Recipient of the Anthony Abbene Scholarship

“I knew that in order to excel in college, I would need a university that understands the needs of the disabled student and has an office specifically dedicated to that student population”

Kyle obviously chose the right institution because excelling is exactly what he is doing. Entering his third year at Eastern Washington University he absolutely loves being a college student. “I have attended all the home football games, all of the home basketball games, and participate in ultimate Frisbee intramurals”. He also has a job on campus working with the very same Disabilities Service Center that influenced his decision to attend Eastern Washington University. As a clerical assistant he helps students with disabilities on a daily basis. He also serves as a dorm representative on the community council committee. He helps to plan activities, suggests changes that need to be implemented and interacts with the school administration on behalf of the students. “I love being involved in many facets of my college experience and really enjoy my university”. He is also academically sound, pursuing a degree in Therapeutic Recreation. His career choice is an amalgamation of his treatment over the past 15 years and his volunteer activities. He’s worked extensively with physical therapists, occupational therapists, and speech therapists to help him overcome the impact of several brain surgeries. In addition, he has volunteered with the YMCA’s “Pedaling for Parkinsons” class. “I think my personal journey living with a brain tumor, my love of helping others, and the growing field of healthcare, all converge together in the field of Therapeutic Recreation”.

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Aaron Holliday

Recipient of the Anthony Abbene Scholarship

“I do not know how my hydrocephalus will affect me in the future. I cannot let that concern me though”

Aaron certainly did not allow the uncertainty to concern him in high school. He played wheelchair basketball for seven years, wheelchair softball for three years, sled hockey for four years and participated in wheelchair track and field for his high school for two years. He was also a member of the chess team for four years, Genealogy Club for a year, Operation Snowball for four years, S.O.A.R. Youth Group for four years as well as the Viking Choir for two years, with whom he toured Europe. Aaron expects to be just as active when he enters the University of Wisconsin-Whitewater this fall to study graphic design. “I hope to broaden my knowledge of Art and Art History and learn how they both relate to the foundations of graphic design”. Regardless of his chosen profession, Aaron will continue to educate people about hydrocephalus. He went to the hospital to visit a friend who had been diagnosed with hydrocephalus. He was able to reassure him and his family that although the initial diagnosis may seem overwhelming, they should not feel stressed. He then took it upon himself to educate adults and students about hydrocephalus at school activities and community events. “They do not understand the medical aspects or the science. Rather than have little children stare, it is much easier to just answer their questions”.

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Lauryn Honore

Recipient of the Anthony Abbene Scholarship

“I yearn to engage in organized curiosity to become an active contributor to scientific knowledge”

Lauryn’s yearning will be satisfied when she enters Louisiana State University – Honors College in the fall. “Does your blood type put you at greater risk for cognitive decline?” is one of the questions she hopes to explore while pursuing her studies. Being born with epilepsy has given her a deep personal interest in the study of the brain. She has already begun the pursuit of this interest as she was chosen as one of the 25 students from across southern Louisiana to participate in the Central Louisiana Area Health Education Center’s summer program, designed for students interested in healthcare. “AHEC facilitated my exploration of various medical centers through job shadowing opportunities with practicing physicians and medical school students”. It was via this experience, which also included an opportunity to explore research with medical experts, that Lauryn realized her desire to become a pathologist. She plans to earn an undergraduate degree in psychology and attend medical school. Lauryn’s hydrocephalus diagnosis is relatively new. In May, 2015 she was experiencing severe migraine headaches, nausea and vomiting. Multiple trips to the doctor yielded no relief. One day her Mother picked up her up from school, realized something was seriously wrong and immediately headed to see her doctor. By the time Lauryn arrived she had lost use of her limbs and eyesight. She vaguely remembers being placed into an ambulance and taken to the hospital. By the time she became alert, multiple test had been performed and she was informed that she had Dandy-Walker Syndrome and would require surgery the next day. She was already familiar with the terminology because she has a younger sister who was born with the condition. The very next day she received her VP shunt and her doctor assured her that she would make a full recovery. “My doctor helped me to see that I could live a long and productive life, which is exactly what I plan to do. The care and reassurance he provided made me realize the type of doctor I aspire to be”.

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Walter Little

Recipient of the Anthony Abbene Scholarship

“Over the years I have been asked ‘Don’t you want a normal head?’ My answer is ‘no’ because God made me this way and allowed me to survive into adulthood, so why would I want to change his perfect work?”

Another reason for Walter’s response is he was diagnosed with hydrocephalus at birth in 1963 and remains unshunted to this day, so he wants to be a source of encouragement to others. Walter does not stop there when it comes to helping the hydrocephalus community. He has become a repository of information about hydrocephalus. He created Walter’s Hydrocephalus Education Blog and has written several papers on hydrocephalus. His most recent paper Bringing Hydrocephalus into the 21st Century was written for his college English class. After a twenty five plus career with the fire department he had to retire due to arthritis in his knees. Instead of going quietly, Walter is pursuing a bachelor’s degree in Fire Science and Emergency Management. “I am going back to school so I can educate the up and coming generation of firefighters about the career that I have loved since the age of 19” Walter’s desire to help may have origins in his high school experience. When he was born, his Father opted not to have him shunted. Maintaining his balance was a challenge and he started school two years later than he was supposed to begin. From an academic standpoint he was fine, but when he reached high school he was confronted with classes on different floors and a struggle to get to classes on time. The senior class “adopted” him to ensure that he made it to class in a safe and timely manner. Their kindness paid off when Walter graduated from high school with a 4.0 GPA and two academic awards. “I have not let my hydrocephalus stop me from reaching my full potential and living my life to the fullest”.

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Kinley Parker

Recipient of the Anthony Abbene Scholarship

“I have always had faith in God to help me with the challenges I face with my condition”

Kinley’s reliance on her faith has also driven her to “Pay it Forward” by helping others. “Volunteering is important to me and I’m active in my community and church. I volunteer annually with Toys for Tots, Hydrocephalus WALK, BETA Club Christmas Party for Needy Kids, and my local church. I enjoy singing in my church choir at Zion Chapel Baptist Church and being active in the Youth Group as we prepare Operation Christmas Child boxes throughout the year. Our church also has multiple outreach events throughout our community including caroling, welcoming baskets for new families, and seasonal baskets for our adopted elders in the nursing home. As an active member of ASTRA of Jack and the secretary, our organization adopts families for Christmas, make gift bags with hygiene products for the homeless, support children diagnosed with cancer, raise money and donate it to the Hydrocephalus Association, host Father – Daughter Dance, participate in Jack Day and Relay for Life.” Kinley’s chosen career path will allow her to continue her tradition of service. “After graduating college with my bachelor’s degree in nursing, I would like to work in the healthcare industry in a hospital or doctor’s office to use my skills and abilities to improve the lives of others”. Kinley will embark on her nursing journey when she enters Wallace Community College this fall and eventually transfer to the University of Alabama. Like many hydrocephalus patients, her personal experience influenced her career choice. “Nalini, a nurse at Children’s Hospital and Chairman of Central Alabama Hydrocephalus WALK, has influenced me by sharing about hydrocephalus and going above and beyond within her field of expertise in nursing.”

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Armela Mustafaj

Recipient of the Anthony Abbene Scholarship

“I would be there for anyone who had to live with what I’m going through because no one understands it better than we do”

What Armela understands is being diagnosed with hydrocephalus at 11 months old, having a shunt revision at 7 years old, followed by a shunt infection, and then another revision again 3 years later. “Growing up with hydrocephalus was tough in the beginning. I felt different from my friends at school because I wasn’t allowed to play certain sports due to the risk of getting hurt”, but Armela found a kindred spirit in her friend Amy. “Living with a brain condition is tough, but when you have someone to talk to and understand what you’re going through feels great. Through my experience with hydrocephalus, I always talk to my friend Amy because she has hydrocephalus too. She understands when I say I’m in pain and it’s like no other”. Having someone there for her has inspired Armela to be there for others. She’s going to employ that same philosophy as an elementary school teacher. She will soon begin her senior year at Manhattanville College in Purchase, NY where she is pursuing a double major in Childhood Education and Communication Studies. “For as long as I could remember, I have always wanted to be an elementary school teacher. I was so inspired by the great role models through my days that I wanted to have the same effect on a child someday. Just the lightening up and the glows of a child’s smile make me happy”.

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Loran Pelecky

Recipient of the Anthony Abbene Scholarship

“Don’t try and figure out what you want to do, but rather figure out what problem you want to solve”

The problems that Loran wants to solve are several and include women’s rights, mental health stigma, religious tolerance, bullying, cancer, global warming, and ensuring everyone has healthcare. She currently lives in United Arab Emirates where she has resided for the past four years, but will be attending Purdue University to pursue a Bachelor’s in Public Health. Loran plans to use her experience of living in the Middle East and attending college in the United States to increase religious tolerance and empathy. Loran was diagnosed with hydrocephalus at the age of two and received a shunt, but has had no serious complications. “Every person’s experience with hydrocephalus is different. My experience has so far been one that allowed to me live a fairly normal life. I think that the way I could best help someone with hydrocephalus is to give them hope”. Loran’s “normal” life has not caused her to ignore the hydrocephalus community as she participated in the Chicago WALK.  “I had an online fundraising page that raised about 1,000 dollars. I went to this WALK in Chicago with my entire family and about 5 of my closest friends. It was a truly incredible experience because it was the first time that I met anyone else with hydrocephalus.  I felt empowered by the ability to raise money and participate in the WALK. I had power over hydrocephalus and was helping other kids be able to receive treatment like me and one day finding a cure”.

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Josh Rittberg

Recipient of the Myles Chamberlain Scholarship

“Hydrocephalus has shown me to never take anything in life for granted”

Hydrocephalus has probably shown Josh’s entire family to never take anything for granted because not only does Josh have hydrocephalus, which was diagnosed when he was an infant, but his sister also has hydrocephalus. “My sister about a year ago, had a shunt malfunction. That one malfunction led to two surgeries, and severe pain ever since”. At 19 years of age, Josh is fortunate to have never experienced a shunt malfunction, but hydrocephalus has adversely impacted his motor skills and thus his ability to learn how to drive. “I am still working towards getting my license, but what I lack in fine motor skills, I make up for in social skills and enthusiasm for life.” That enthusiasm includes a passion for the theater which is why he currently attends Millersville University in pursuit of a Bachelor’s in Communications with a concentration in Theater. “My dream job would to be a theater critic.  I currently volunteer as a theater journalist for my school newspaper The Snapper. With The Snapper I have had the privilege to not just review productions, but also to interact with the artists who make them happen”.

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The following seven scholarship finalists are recipients of Microsoft Surface tablets, graciously donated to the Seattle, WA WALK by a family team with a connection to Microsoft. The donor wanted members of the hydrocephalus community to benefit from these tablets.

 

Morgan Miller

Zachary Harriss

Kyle Wilson

Susan Gould

Alyssa Sanders

Emily Aarons

Ryan Kirkwood

 

 

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