Announcing our 2019 Hydrocephalus Association Scholarship Recipients!

Robert has participated in the Western Pennsylvania WALK to End Hydrocephalus. His desire to succeed is evident in his approach to both scholastic and extracurricular activities and his interest in learning is inspiring.

Colin Holt

Recipient of the Anthony Abbene Scholarship Fund

“Each of us will go through some trial that will be fraught with pain, but it is in those moments that we should be reminded to push through those adversities with perseverance.”

Colin is a freshman at Whitworth University where he is majoring in biochemistry, with a minor in psychology. In high school, he took advanced courses in the International Baccalaureate program and he completed two years at Columbia Basin College where he received his Associate in Arts and Science degree. Colin has a strong desire to help others overcome medical challenges. He plans to accomplish this by becoming a doctor, specializing in the field of oncology. “I feel that my personal experiences coupled with my academic achievements have prepared me to be a doctor that understands how to empathically deliver a tough message.”

Colin was diagnosed with prenatal hydrocephalus due to an intraventricular hemorrhage. Initially, his neurosurgeon performed an endoscopic third ventriculostomy (ETV) to manage his hydrocephalus. However, his ETV eventually failed and Colin had a shunt placed. Throughout the course of Colin’s life he has endured numerous shunt revisions and countless surgeries due to other health issues, one of which included a chiari decompression due to a syrinx. Nevertheless, he remains positive and continues to overcome the complications, pain, and hardships. “I believe discomfort is a stepping stone to greater things.”

Colin loves music and is a skilled pianist. He has participated in the Portland, OR WALK to End Hydrocephalus and helped form a team from his community to raise money and awareness for hydrocephalus at the San Francisco Marathon and Team Hydro’s Alcatraz Swim.

Hard work and dedication are at the core of who Colin is and we believe with his drive, energy, and commitment nothing will stop him from achieving his goals and dreams.

Matthew Jameson

Recipient of the Morris L. and Rebecca Ziskind Memorial Scholarship Fund

Matthew recently earned a Bachelor of Arts degree in Psychology at the University of Massachusetts Dartmouth and is currently studying to receive a Master of Arts Degree in Global Inclusion and Social Development at the University of Massachusetts Boston.

Matthew was diagnosed with prenatal hydrocephalus and had a ventriculoperitoneal (VP) shunt placed. As a child, his shunt often malfunctioned which led to emergency brain surgeries. The impact hydrocephalus has had on Matthew’s life has empowered him to become a fierce advocate for those living with disabilities.  “I have had others tell me that I don’t ‘look’ as if I have a disability.” As the Senator for the Student Government Association, he is focused on improving accessibility on campus. When he served on the Board of Directors of the Easterseals Massachusetts (ESMA), he assisted in creating a mentorship program for young men with disabilities. “I aimed to bring young men with disabilities together in an environment that would stimulate genuine dialogue and the roots of change making.” Matthew has been an active peer mentor in organizations such as Partners for Youth with Disabilities’ inclusive summer theater program and he has participated in many of the HA’s events, including the Greater New England WALK to End Hydrocephalus.

Matthew is a born leader, focused, and has a strong sense of himself as a student and as an advocate for others with disabilities. We know he will go on to be a positive force for change for those living with disabilities. “One of my goals is to empower individuals with hydrocephalus and all disabilities to speak out against discrimination in all its forms.”

Oliver Lee

Recipient of the Hydrocephalus Association Scholarship
Special thanks to Lisa and Erik Chamberlain of Rokton, Illinios, for providing support of this scholarship.

“After years of both physical therapy and occupational therapy, by about the age of five, other than my scars (my badges of honor and confidence) my hydrocephalus is not obvious to the typical person. I am not ashamed to have hydrocephalus, I am proud. I am a survivor.”

Oliver is a sophomore at California Lutheran University where he is on a five-year track to obtain an undergraduate degree in Spanish, with a minor in biology. He does not view education as a race, or a benchmark to be met. “I realized that I needed to take it slowly my first semester of college when I had nearly forty medical appointments in four months.”

Oliver was born with a Chiari I Malformation and had a ventriculoperitoneal (VP) shunt placed at four months of age. He has undergone seven surgeries to manage his hydrocephalus. In 2016, Oliver developed a life-threatening allergy to latex which has drastically changed and impacted his life. “Life is not as carefree as it was before this allergy… I could no longer hang out with my friends at any location – without making calls first to see, is the restaurant safe? Is the environment safe from balloons? Will I be ok?” Despite this, Oliver continues to thrive and does not shy away from standing up for what he believes in. With his family, he has advocated banning latex from food service in the state of California. “I brought this matter to the attention of my California State Senator, Ben Allen, who authored SB 677, a bill to ban latex from food preparation and service in the State of California. It passed through six committees unanimously and on September 5, 2019, Governor Newsom signed the legislation into law, with an effective date of January 1, 2020.”

Oliver has a strong passion for emergency medicine and believes in the value of what he can do to help others through science. He is registered with the Ventura County Fire Department as an ACLS provider and recently completed the training program for Community Emergency Response Team (CERT) with the Los Angeles City Fire Department, but he isn’t stopping there. Oliver’s dream is to become a paramedic and to attend medical school.

Oliver attended the Hydrocephalus Association’s 15^th National Conference on Hydrocephalus, HA CONNECT, and supports the organization through AmazonSmile. “I made friends, made connections, met those who work so hard for us at HA and suddenly I did not feel so alone. This was a remarkable experience.”

Aaron Miller

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

“I have had a love-hate relationship with hydrocephalus. From my childhood to my teenage years I have swayed back and forth between focusing on hating the actual condition and loving the community around the condition.”

Aaron is a student at Virginia Tech and he is studying to earn a Bachelor’s Degree in Mechanical Engineering. He desires to have a career where he can use his imagination and make new innovations in the future. “I have found that there is no better feeling than seeing a small vision in your head come to life. In today’s world, there are new discoveries made in technology and science every single day.”

As a child, Aaron suffered from headaches and poor balance, however, his doctors did not discover he had hydrocephalus until he had to undergo a CT scan due to a head injury at soccer practice. Aaron’s neurosurgeon performed an endoscopic third ventriculostomy (ETV) to treat his hydrocephalus. “I have been extremely lucky in my life because I have not had any additional surgeries or complications after my initial surgery.”

In the beginning, Aaron did not disclose his condition with his teachers or classmates. It was not until he attended HA’s local Education Day that this changed. “I realized that there was so much information that I didn’t know about my condition because I suppressed it for so long. I was so focused on being normal that I neglected a whole part of me… I finally learned that this condition is not something you should put in a box. I realized I could turn my long-time demon into a springboard for activism.” Aaron has interned at HA’s office, participated in local Education Days, and volunteers and fundraises for the National Capital WALK to End Hydrocephalus.

Nicole Ohr

Recipient of the Gerard Swartz Fudge Memorial Scholarship Fund

“I ended up undergoing three surgeries this past September… Although each surgery for hydrocephalus is a setback in my life, I have become much stronger by learning what it takes to overcome it.”

Nicole is well on her way to making her dreams to become a professional performer and artist, having already graduated with honors from Hofstra University with a Bachelor’s of Arts Degree in Dance and Psychology. She is continuing her education at Hunter College’s Dance Education program to receive a Master’s Degree in Dance Education. Nicole has been passionate about dance her entire life and at the age of four, she began taking tap, jazz, and ballet.

At the age of seven, Nicole began experiencing issues with balance and coordination. She was diagnosed with a brain tumor and acquired hydrocephalus. Due to the symptoms and the discomfort, while dancing, Nicole had to stop taking ballet for a year. Fortunately, after receiving treatment for her hydrocephalus, she had minimal complications. However, in 2017 Nicole’s health quickly declined. Within one-year Nicole underwent six brain surgeries, which caused her to miss three months of work. Through it all, Nicole remains optimistic, patient and does not let her condition prevent her from dancing. “Tap dance has gotten me through many surgeries and many hard times. The desire to return to what I love, has helped me heal quicker both mentally and physically.” Nicole is a professional tap dancer, choreographer, producer, and instructor. She strives to teach her students to love every aspect of the art form; its technique, history, and culture.

Nicole performed with her dance company at the Long Island WALK to End Hydrocephalus and continues to fundraise for the WALK each year. In addition, she taught tap dance to children living with hydrocephalus at Camp Head Strong. “There was nothing better than giving back to a cause which meant so much to me, by doing something I absolutely loved.”

Nicole is proof that in spite of the obstacles or setbacks individuals living with hydrocephalus may face, with a positive attitude and strong support system, you can defy the odds. “One big lesson that hydrocephalus has taught me is to stay positive and to stay strong. This would be one way in which I would want to help others with hydrocephalus… Instead of seeing all of the aspects of hydrocephalus which weaken you, find ways in which it has made you better, made you stronger.”

Alison Puckett

Recipient of the Gerard Swartz Fudge Memorial Scholarship Fund

“I dream of the day where brain surgeries are no longer necessary for every patient, and hydrocephalus is cured.”

Alison is a freshman at Walton Honors College of Business at the University of Arkansas, where she is majoring in marketing, with a minor in biology. Diagnosed with hydrocephalus at the age of one, she has developed a deep personal passion to help others. Her firsthand experiences are her motivation for pursuing a degree in healthcare law and a career path in pharmaceutical or medical sales.  “I would love to sell shunts or anything in the pediatric field because I adore children, and I have the heart for what they are enduring as well.”

Hydrocephalus has had an immense impact on Alison’s life. By the age of four, she had undergone her fourth brain surgery. To date, she has endured seven brain surgeries related to her hydrocephalus and she was diagnosed with Post Traumatic Stress Disorder. Nevertheless, Alison does not let the challenges of hydrocephalus defer her from achieving her goals. “I have learned to be cautious, but courageous in all that I do. The pain I feel on a daily basis, could ultimately hold me back, but that would be my choice. I have learned to overcome obstacles, and to be empathetic towards everyone I cross paths with.” In middle school and high school, she was in the National Honor Society, served on the student council, and is part of DECA, a business club that allows her to compete in marketing competitions with peers from around the world. Beyond excelling in school, Alison meets with local families impacted by hydrocephalus and is a nanny for a child with hydrocephalus. “I enjoy helping them gain a deeper understanding of hydrocephalus and the possibility that their baby can still live a happy and high functional life despite the setback.”

Alison’s mother started the first WALK to End Hydrocephalus in St. Louis and their family continues to participate and fundraise each year. For her birthday, in lieu of gifts, Alison asked that donations be made to HA. She raised over eight hundred dollars in a few short days. Regardless of her profession, we know that Alison will continue to serve as a role model to others in the hydrocephalus community, providing support and hope for the future.  “I want to achieve everything I set my mind to. I want to prove every person who has ever doubted me wrong. I want to show the world that hydrocephalus does not set me back, but instead it gives me strength and passion.”

Alex Rodger

Recipient of the Anthony Abbene Scholarship Fund

 “With hydrocephalus I do not believe that my goals are too hard to achieve. I know they can be reached with hard work and determination.”

Alex is a student at the University of Florida and plays the trumpet for the University of Florida’s Fightin’ Gator Marching Band. After graduating he plans to continue his education to receive a Master’s or Doctorate’s degree. This will allow him to explore a career in sports medicine and orthopedic medicine field. “I would like to work in a career where I can help others and also work in the medical field in which I have been exposed to for much of my childhood.”

Diagnosed with congenital hydrocephalus at six months of age, Alex has undergone seven brain surgeries due to shunt complications. At a young age, he had to learn how to navigate the day-to-day challenges of living with a chronic condition. “There were days I did not want to get out of bed or go to school, simply because my “head hurt.” Through elementary school, kids would wonder where their classmate was, the kid who always went to the hospital, and never really explained why. I was shy when I was young, worried that kids would label me for this scary-sounding word. Through many questions and diverted looks, I persevered, and this was the changing point in my life.” Alex certainly has persevered and does not let his condition define him or stand in his way of achieving his goals. In high school, he graduated in the top ten percent of his class and was ranked 60 out of 880 students in his senior class. Alex was a member of the National Honor Society, HOSA-Future Health Professionals, and volunteered at the Miracle League in Boca Raton to help kids with special needs learn and experience the fundamentals of the game of baseball.

Alex has become a champion for HA and the hydrocephalus community. Alex’s family started the South Florida WALK to End Hydrocephalus. Each year, he volunteers and sends out hundreds of letters as part of a letter-writing campaign to fundraise in hopes of a cure. In 2012, Alex attended his first National Conference on Hydrocephalus, HA CONNECT, and since then he has gone on to speak on several occasions at not only HA CONNECT, but HA’s Miami Hydrocephalus Education Day, and other local events. “This experience made me realize that I can truly inspire parents that do not know what the future holds for their child… Meeting new families and friends have given me a new perspective on how I look at life, and how I can impact the community around me.” Alex is also a member of HA’s peer support program, HydrocephalusCONNECT, and participates in fundraising events, including one with the Florida Panthers Foundation and Painting with a Twist to help raise money to support HA. “Each one of these events has provided me with more information and confidence to be able to effectively inform people about hydrocephalus and give other people answers to questions that so very often go left unanswered.”

This scholarship award may only be a fraction of what Alex has already contributed to the hydrocephalus community, but it will help him move toward a career in the medical field. We are confident that Alex will continue to positively impact the community, encouraging children, parents and adults that they can live a full life and accomplish any goals they set for themselves. “It may not always be easy and surgery is often part of life, but hydrocephalus should not have to define you.”

Amanda Schumacher

Recipient of the Morris L. and Rebecca Ziskind Memorial Scholarship Fund

“I want to help those people the way I have been helped by offering my friendship, spreading awareness of the condition, and helping to raise funds for a cure.”

Amanda is studying at Northwest Arkansas Community College (NWACC) where she will receive her Associate’s Degree and she is beginning her culinary training at Brightwater, a culinary school affiliated with NWACC. After completing her general education courses and culinary requirements she will transfer to the University of Arkansas to obtain a Bachelor’s Degree in Food and Culinary Science to pursue a career in product development with an emphasis on creating healthy, yet tasty, foods for individuals with restricted diets. Amanda specifically wants to focus on creating food for individuals with renal diets. “With my degree in food and culinary sciences, I plan to contribute to the food science industry while helping my beloved grandfather by developing renal-friendly foods for him and others to enjoy.”

Born prematurely, Amanda was diagnosed with hydrocephalus at fifteen months old. The condition has profoundly impacted her life physically, perceptually, and socially. As a child, she had poor muscle tone, balance and she lacked strength and fine motor skills. She spent years in physical and occupational therapy. “It took 10 years, many therapists, and one patient dad to help me learn to ride a bike.” Hydrocephalus has also affected Amanda’s vision, ability to interact with people in social settings and she was diagnosed with a sensory processing order and Asperger’s syndrome. With the help of her family and healthcare team, she has not only overcome the challenges but has supported two classmates living with hydrocephalus. “I learned the importance of befriending those with special needs.”

Caleb Wolf

Recipient of the Gerard Swartz Fudge Memorial Scholarship Fund
Special thanks to Molly Mastrangelo for providing support of this scholarship.

“If a patient is ever depressed or feeling like no one understands, I can simply show them my scars and tell them my story to give them hope that they can make it too.”

Caleb is a student at Missouri Southern State University where he is studying to receive his Bachelor of Science and Nursing (BSN) degree. His dream to pursue a career path in nursing directly comes from the hardships he has faced throughout his life. Caleb was born with a Chiari II Malformation which caused hydrocephalus. In addition, he has epilepsy, Factor VII Deficiency (a genetic bleeding disorder), and a mixed connective tissue disease. Due to this, he has missed many major milestones in his life. Within a period of twelve years, he endured over one hundred surgeries. “I often spent holidays and birthdays in the hospital, and missed a lot of school.”

Caleb has overcome tremendous adversity and continues to persevere, living his life to the fullest. As a child he played football, baseball, basketball, soccer and snowboard. “My parents never told me “No,” to a sport; they let me do what I wanted because they wanted me to be as much of a “typical” kid as possible.” At the age of twelve, Caleb co-founded a 501© (3) non-profit, Henson’s Heroes, that delivers toys to the children of Children’s Mercy Hospital. “Since it’s conception, my organization has donated more than $200,000.” His drive for helping other children and teenagers did not stop there, he joined the Teen Advisory Board and iCAN KIDS Board at Children’s Mercy Hospital, where he offers advice and feedback on how to improve care. He has also spoken at the hospital’s “Discover Children’s Mercy” days for regional leaders and volunteered in their gift shop and “Courtesy Cart” program.

The future is bright for Caleb. He has all the strength and character needed to succeed in the medical field.

“I would be able to tell patients who suffer with hydrocephalus that there is hope, and that it can get better… Having someone to talk to can mean the difference between life and death, and if that person knows exactly what you are going through then it is much easier to have hope.”

Abigail Wood

Recipient of the Mario J. Tocco Hydrocephalus Foundation Scholarship Fund

“Physical and emotional pain are frequent companions, but I will not let it stop me from achieving my goals. Although my neurological conditions make me different than others, my life is just as worthy, and I am still capable of many things.”

Abby is attending Central New Mexico Community College to earn a degree in Associate of Arts in Psychology and a certificate in American Sign Language. After graduation, she plans to transfer to New Mexico State University to receive her Bachelor of Arts in Family and Child Science to pursue a career path as a Child Life Specialist. As a Child Life Specialist Abby looks forward to “paying it forward” to others. “My goal is for children to know that everybody cannot do everything, but everyone can do something.”

Abby describes hydrocephalus as the “monster under my bed”, due to the intermittent nature the condition has; to rear its head and cause devastation. Diagnosed with hydrocephalus at birth, she has endured multiple brain surgeries. “By the time I turned 11 years of age, I had endured more surgeries than birthdays.” Abby sustained permanent optic nerve damage due to shunt malfunctions. Her condition was rather stable for four years. “I had the opportunity to ‘be a kid’ like my peers. Weekly physical and occupational therapy appointments were finally replaced with dancing and running.” Unfortunately, in her sophomore year of high school, her ability to run and dance came to a sudden, unexpected stop when her shunt failed repetitively. Shortly after, Abby was diagnosed with a Chiari Malformation and underwent a posterior fossa decompression. During surgery Abby suffered a hemorrhage from a vein malformation that was inadvertently nicked at the base of her brain. This resulted in nerve damage, muscle atrophy and significant weakness and numbness on the right side of her arm and leg. “Every day I was painfully reminded of my previous life, as I struggled to hold a cup, tie my shoes, or put my hair in a ponytail.” Abby continued to face shunt complications throughout high school, but she remained committed to her studies and has served her community by participating and volunteering at her local WALK to End Hydrocephalus. Abby has attended the National Conference on Hydrocephalus, HA CONNECT, nine times with her family. “I aspire to speak at future conferences to share my experiences with my peers and their families.” Regardless of the obstacles, she may encounter, Abby is committed, driven, and fully prepared to face them head-on. We would be fortunate to have Abby as a speaker at HA CONNECT. There is no doubt that she would make a remarkable, inspirational speaker.

“My connection to hydrocephalus will provide me with the unique opportunity to encourage children with hydrocephalus and let them know that they are not alone and that they will succeed in life.”

Congratulations to all of our Awardees and Finalists!

You inspire us all!

2019 Hydrocephalus Association Scholarship Finalists