ALS Family Scholarship

ALS has affected my life by taking my father's life in 2014. This all occurred the summer before I attended Woodlawn Beach Middle School. These years are very formative for a child and it was extremely hard on my sister and I to be forced to live without him because of this horrific disease. While I still miss him every day, I thank him. He helped me decide what I wanted to do with my life, and how I wanted to further my education, and above all, he helped me understand my dream of teaching. I first realized my dream of teaching in 5th grade, the last school year that my father was with us. My mother knew he was declining in health, so she made sure to inform my teacher and school counselor. This was to give them a background and a possible explanation as to why I would be upset a lot of the time. Mrs. Rodman, my 5th grade teacher at West Navarre Intermediate School was an absolute savior for me and I will never forget that. She would send me home with books to read to my father at bedtime, as at this point he couldn't move any part of his body or talk and she just knew it would be something we could enjoy together. Looking back on this now, it is funny how the roles were reversed during bedtime stories. Even though he couldn't talk, we still could laugh all night over a funny joke or story. Mrs. Rodman made my last year with my father the best year I had with him. It even trumped the years we spent together before he got sick. Because of her, I discovered my dream of teahing. I aspire to be like her. To be the teacher that is there for their students as much as they can be. I want my future classroom to be a safe space for all students to be who they are, even if they are dealing with trauma at home just like I was. Right after my father passed away in 2014, the ALS Ice Bucket Challenge gained immense popularity. Everyone at my school, as well as celebrities online, were posting videos of themselves getting drenched in ice-cold water in support of ALS. The challenge even made its way to the principal of the middle school I was attedning. My sister and I even got called up to the office, where they asked us if we would be okay with the principal making a video of him completing the ALS Ice Bucket Challenge. We were delighted when we heard about this. The next day, the video played throughout the school on every single TV. As I watched I couldn't help but cry. Not out of sadness, but out of joy. At the end of the video, he announced "Two of your fellow classmates have just recently lost their father to ALS" and went on to explain the disease. I am still able to recall this memory as if I was still sitting in the PE locker room floor as I was when it happened. I will forever appreciate that the school took the time to do this. This scholarship would allow me to continue working towards my dream of being the best teacher I can be, one that is there for their students just like my teachers in the past. Thank you for your consideration. Sara James

When I was seven years old my father passed away from ALS. He was 42 years young and his name was George Anthony Jaynes, however, he went by Tony. The passing of my father affected my family and me in many different ways. Growing up without my father was by far the most difficult aspect to cope with. While I will always wish I had more time with him, I am grateful that this tragic event occurred when I was quite young, as opposed to being much older it may have hurt much more. I believe my family of three was middle class as my mother did an amazing job raising us as a single parent. I recall her having jobs ranging anywhere from waitress and bartender to cleaning houses, anything that would help make up the persistent hole in a single-parent household. From a very young age, I had an interest in science and the medical field. It was when I entered high school that I took a special interest in neurodegenerative diseases like ALS, what caused them and what research was being done. Any time I would have to do some type of research paper in my science classes on a topic of my choosing, the topic was always ALS. I started to follow along with any advances that were being made in terms of finding the exact biological cause of ALS, and a potential cure. I would one day like to be a part of this research and be able to help in any way possible to find a cure. This scholarship will aid in paying for the last semester of my undergraduate biology degree at The University of North Texas. After I complete my undergraduate degree, I plan on gaining credentials to be able to apply for Physician Assistant school here in the DFW area. Upon completing a Physician Assistant program I would like to specialize in neurology. Being able to combine two of my biggest goals; becoming active in the medical field and being a part of ALS research is the ultimate goal. Becoming a Physician Assistant specializing in neurology would be more than enough to reach these goals of mine. I hope that once I can get my foot into the field of neurology, I will be able to get involved in some type of ALS research or be able to contribute to the cause in any way that I can. My family and I have always tried to support the cause, doing walkathons and attending fundraisers. However, being able to contribute even the smallest bit to the research and development of a cure is one of my biggest goals, and overall this scholarship will help put me one step closer to that goal.

Hello, my name is Charlie Blackburn and I lost my dad to ALS back in 2019. I am a single mother of a wonderful four-year-old and am going back to college to get my master's in business administration. I decided that it was time to go back because of my son and my mom. My mom lost her husband, my father, to ALS. He lost his four-year battle when my son was only a month old to the day. The reason I am applying for this particular scholarship is that it hits really close to home. I did the ALS walks and raised money for charities aiding families with ALS. I even quit my then job as an accountant to stay home and take care of my father all while getting my bachelor's degree in accounting. All I have left are my son and my mother. My dad was my absolute best friend and when we lost him it was the hardest day of my life so far. He was such an amazing man, dedicated to his family and to church. I chose to go back to school now to help in the future be able to take care of my mom and my son physically and financially. My mom has had such a hard life recently and she deserves every bit of love and support she can get. Ever since we lost my dad my mom has been running her business alone with my help on nights and weekends. She recently had two strokes and had to have a heart operation to put a metal piece between the two chambers of her heart to stop the strokes. It has been a roller coaster to say lately with taking care of her, helping run the business all while raising my son alone. This scholarship would help me so much and make a tremendous impact on my life by not going into further debt by trying to help my family. I am just a small-town bookkeeper at the moment and like I said I work nights and weekends with my mom to help ends meet and to also help her not to have to do it all alone. My goal with the MBA is to work up to becoming a controller one day or at least in some management position so that my family will not have such a financial hardship. Thank you to your family for doing such amazing things and helping families that have been affected by ALS. I want to wish everyone the best of luck!

I have always been a fan of the superhero genre but when we moved into the city it took over my lifestyle. Reading about Batman and Superman and learning about them inspired me to create my own character. Two months into the pandemic I created my superhero, Sir Orlean and the impact he had on me was greater than I thought possible. Two weeks into the pandemic, my dad was diagnosed with ALS. I am the oldest of 5 kids and my parents have been married for 20 years. The ALS diagnosis was very hard on me. I felt like I had to be the older brother, who held it together and did whatever my little siblings needed. I had to be strong for my mom. Stuck at home and trying to figure out my own grief I was able to create a character where I could express my feelings. When my dad started to fall due to ALS, I would be so upset that I could not catch him in time. My mom taught me that if we can’t catch him, we still need to be there to pick him up. This is where my character, Sir Orlean came in. Sir always gets there on time. Like me, Sir likes to help people, so during my hard times of grief, I was able to create Sir Orlean's story. The last 3 years I have been able to create and self-publish my first comic book funding it through kick starter. I raised $5K and sold over 100 copies. My art is my passion and I will continue evolving Sir Orlean. Once the pandemic restrictions started to lift, I was able to start working and could pay for my own car insurance and gas. Our family of 7 now lives on a fixed income. Money is tight and we have to raise funds for my dad’s care. My mom has been the sole caregiver up until the tracheotomy in November 2022. We now have some part-time caregivers, including myself. Starting college in the fall, I decided to stay local because I don't want to miss any opportunities with my dad. However, I would love to live on campus if I receive funding. I decided to major in Business with a focus on marketing. This will give me opportunities in a lot of different avenues, whether it be continuing to publish comic books, creating characters for others, digital art and so much more.

I had never heard of ALS until one morning when my dad came back from his annual health checkup saying his doctor noticed twitching in his arms. After numerous tests and appointments over several months, he was officially diagnosed with limb-onset ALS in 2018. He lived with ALS for three more years until passing away in early 2021, during COVID-19. I watched my dad as he gradually lost the ability to walk, speak, and breathe and become less and less himself. I would watch him in his wheelchair using his eye-gaze computer all day, wishing he could just get better and go back to the active, goofy dad I always knew. Yet, he maintained a good attitude and did his best to participate in any clinical trial he could, while also accepting the fact that he would most likely die and had peace with himself. My dad was the primary source of income in our family and worked diligently as an ESL teacher at a public elementary school. After his diagnosis, he was forced to retire immediately and my mom, brother, and I became primary caregivers as we took care of him at home. Due to this, no one in my household was working for the three years my dad was sick. We faced the costs of renovating our home to make it wheelchair accessible, countless medications, supplies, and appointments and simply providing for our everyday needs with no income. Hiring a caregiver was not in our budget. We took care of our dad twenty-four-seven with no breaks, and I remember trying not to cry at night trying to finish my mounds of homework while listening to make sure my dad wouldn't start choking while sleeping. I couldn't even imagine how my brother who was 8 years old at the time felt, or my mom who had to watch her husband die a slow death. This scholarship would affect my career plan greatly. Cultivating in me a love of other people and cultures, my dad was the biggest inspiration for my career aspirations. I also wanted to participate in international studies and help make a difference in the world just like he did while teaching English to kids. This scholarship would be essential in helping me afford my tuition, without having to burden my family's financial status and taking away any opportunities for my mom and brother due to my own expenses. Scholarships are currently the main thing I am relying on to help me pay for college. This scholarship would help me make my dad proud so I may pursue a career to help change the world for the better in his memory. Lastly, the question of how ALS has affected my life remains. ALS took away my beloved dad, who was the biggest mentor and inspiration in my life. He loved me, taught me, and supported me every step of the way but ALS took him from me early. However, ALS did not affect my family's resilience and integrity. In fact, it made me even stronger while also cultivating in me compassion and kindness. I did not allow ALS to take away my perseverance and instead allowed me to learn to advocate for other ALS patients, spread awareness, and support other people who suffer from this horrendous disease. ALS has made me grow as a person.

“Treat people how you would want to be treated.” This was a quote my dad used daily. This led him to be one of the best electricians in town and to become very successful. Throughout all the hard years of work, he always loved seeing new people on job sites and providing the best customer care. This included waking up, sometimes two or three in the morning, to go help someone get their electricity on. Watching this growing up, and going on jobs with him, gave me the motivation to become the best electrician I could be. In his free time, my dad had many hobbies including four-wheeling, snowmobiling, being outside, and hunting. Throughout the years, my dad taught me many important aspects; like how to fix things, run motor vehicles, and more. But most importantly, how to be respectful. When I was 13, my dad got a neurological disease, ALS. This disease affects nerves in your body, making it difficult to move and can affect your organs. He fought for his life for months while going to Boston every month and getting neurological treatment, in addition to being a father. He even tried to go on our yearly Myrtle Beach trip with us, even though he had become very weak and was in a wheelchair. Times got tough in September 2017. Every day I would wake up and something would get worse in his body. At this time, we had a priest coming to our house every other day and I was getting very close to Jesus and found a quote that said, “Peace I give to you, not as the world gives do I give to you” (John 14:27) and put this quote all around my house. Later I realized this quote meant not to be afraid, for I will always be with you no matter how hard this world gets. When it became challenging for my dad to eat, my family decided to take him to Buffalo General Hospital. My dad was in the hospital for about 16 days. My sister and I visited him every day. On October 16th, 2017, at 11:11 am my dad passed away. Our family was devastated and is still grieving, but we know he is in a better place now. A year after the death of my dad and the closing of his business, I was still too young to know what I wanted to be. As the years went by, I pondered on what my dad and grandpa would say: “Do what makes you happy and do it well.” After working many jobs, I knew I wanted to work with my hands and enjoyed being outside. I also enjoyed the aspect of running my own business and wanted something successful to put my name on. However, after many odd jobs and trying to make ends meet in our family, I became intrigued with electrical work. Thus, I am very excited to find a program for electrical trade and business management to reopen my dad’s business “Haberly Electric.” Thus, the ALS Family Scholarship would help fund my program and the tools and technology I need to succeed. From this tragic experience, I have learned a lot of things; perseverance, integrity and dedication and most of all, belief in my faith. I have drive and work ethic. When I put my mind to something, I get it done. I would love to take in my father’s footsteps and become a very successful electrician. I know he would be proud of all I accomplished in my high school years academically and athletically.

I’ve always known that I wanted to work in the financial education space, but my life’s goals and mission became more clear to me when tragedy struck my family's life. Shortly after we were married in 2018, my husband was unexpectedly diagnosed with ALS, a debilitating terminal illness with no cure or treatment options. We were both young college students with no money and our lives were completely turned upside down when he became confined to a wheelchair, couldn't talk or eat and was unable to go to school or work. He had no disability/life insurance and was not able to obtain any after such a serious diagnosis. We had no idea he would be affected by such a serious illness so young and we were not adequately prepared financially, mentally, or physically. He was only 21 when his symptoms started. I finished school and began working while I cared for him and our daughter who joined us in 2021. Fortunately, we had a lot of family who were able to help us, but things were difficult. As the breadwinner and primary caregiver, I faced the challenges of watching his body decline while striving to help him feel loved and valued. We were newlyweds and faced unimaginable challenges and difficulties together. My beloved husband passed away last month and I have been experiencing just how complicated it is to get affairs in order after the passing of a loved one. Although he did not have many assets, I’ve still found it difficult to make so many financial decisions while facing such immense grief. I’ve often thought that it would be so helpful to have someone guiding me through the estate planning and settlement process and I wish that we had created an estate plan before his illness started. While I would enjoy helping people in a variety of financial settings, I feel that my experiences and perspective could be used to benefit others in the financial planning and estate planning process. I am particularly interested in working with young people who likely have not thought about creating a solid financial plan, let alone an estate plan. I know that it’s common at my age to not want to or feel the need to create an estate plan. Drawing on personal experiences, I feel that I can help educate others about the peace of mind that comes with having a clear financial plan and estate plan at any age. While I hope that others don’t have to experience what I went through, I know that life can throw curveballs and having a plan for those unexpected events can make a big difference. I plan to work in this space in the community, but my ultimate goal is to teach finance and estate planning at the university level as a lecturer. I’m seeking a post-graduate education to further my knowledge and skills in the family financial planning field to better achieve my goal of helping young people understand and develop financial and estate plans. I need to have at least a Master's degree to teach at the university level. I'll be starting my Master's in August. I'm currently 27 years old and am now a single mom to an adorable 18-month-old girl. We have so much uncertainty ahead of us, but I want to use our experiences to help other people. This scholarship would mean the world to me because ALS has been devastating for our family, and we are just trying to get our feet under us after dealing with such a difficult illness.

Imagine being in your body, fully aware of what is going on around you, unable to move, unable to talk, unable to escape. You are a prisoner trapped in your own body. This was the sad reality for my father-in-law. After a three-year battle, he succumbed to ALS. For all of us who loved him, his loss is a stain that our memory will never let fade. Not only do we grieve his loss, but we are also left with uncertainty about how this illness will trickle down his family line. Watching someone you love slowly stop talking, moving, and breathing on their own is the worst thing I have ever had to witness. Watching his wife, children, and grandchildren experience this was torture. My husband lost his dad, just two months before we got married. We tried to rush the wedding so he could witness it, but ALS was a force too strong to be ignored. We reserved a seat for him in the front row of our ceremony, and we always make sure to celebrate his life on special days. While it has been over 10 years since my father-in-law passed, the sting is still there. My husband and I decided not to have children out of fear that the disease would claim them as well. I live with the knowledge in the back of my mind that it may steal someone else away from me – maybe even my husband. This daunting terror will remain until a cure is found. Thanks to the “Ice Bucket Challenge,” funds were raised and used to discover from which area of the brain ALS stems. This is a huge step, and I can only hope that someday there is another major breakthrough. My husband and I now travel as much as possible. We want to enjoy our time together, no matter what the future holds. We live in the here and now. We have become more loving towards, not only each other but, others. We enjoy the small things. We do not let minor setbacks get us all fired up. These are the upsides to losing someone you love in such a terrible way. Your eyes open and you see the world with more clarity. I am working towards getting my bachelor's degree to better the lives of myself and my husband. I am currently an adjunct professor, but with this degree, I can earn a full-time position at my college. I am hopeful that I can find a good enough career that I will be able to retire at an early age if it becomes necessary. While we will not know if this is something we will have to face, we understand it is a possibility. This scholarship will help speed up the process of my becoming a full-time professor by allowing me to be a full-time student. It is my hope that we continue to research and develop new strategies for fighting, and possibly ending, ALS. I fear for not only my husband's life but for both of my sisters-in-law, my nieces and nephews, and future generations of his family. We will continue to live and love no matter what the future holds for all of us, but not without that ever-present fear in our minds and hearts.

I remember when the "Ice Bucket" first took social media by storm. As I watched millions of people dump buckets of ice on themselves in support of ALS, I was confused about what type of residual effects this disease had on individuals and their families. As I did my research and saw the types of individuals who were affected by this disease, I did not see any people of color. It was not until a year later that I realized that ALS, like most diseases, does not discriminate. For months, I watched my mother continuously fall to the ground and at every doctor's appointment, they had attested it to her weight. When she started losing control of her hand mobility, they stated it was just arthritis. Little did we know that my mother was fastly deteriorating and because of bias and discrimination in the diagnosis of medical ailments, ALS was never a possibility that came out of her doctors' mouth. Within 10 months, my mother could no longer walk, speak, or eat on her own and it was only then the doctors finally diagnosed her with ALS and proceeded to monitor her progression. No one in my immediate family ever even heard of ALS, except for me, who had watched countless videos of people explaining the importance of ALS awareness. On March 30th, 2016, my mother passed away only 4 weeks after she was officially diagnosed. As a grieving 18-year-old with no siblings and so many emotions, it was up to me to figure out my mother's burial arrangements. When I reached out to the insurance company for financial assistance, we were met with a nightmare of constant badgering and delayed bureaucratic processes because my mother did not have any significant "proof" that she was unaware of her diagnosis, leaving her funeral expenses to me. I will never forget calling to make an insurance claim and hearing over the phone from the agent that she wasn't aware Black people suffered from that disease, and maybe my mother was an anomaly which justified the lack of financial assistance. According to the National Library of Medicine, less than 10% of African Americans suffer from ALS compared to 74.8% of white people. Maybe my mother was an anomaly, but that should have not stopped her doctors from removing illicit bias from their practices. If illicit bias was removed from the beginning, maybe my mother could have managed her disease better and would have had more time with her only child. However, it is no secret that illicit bias is embedded in multiple systems that negatively affect marginalized communities of color including medical practices, criminal justice, education, and the list goes on. My mother's death has lit a fire in my soul to eliminate illicit bias from as many systems as possible. I plan to use this scholarship to assist with ensuring that people of color are seen and heard in spaces that can negatively impact their lives and their family's legacies.

My mom was diagnosed with advanced-stage sporadic ALS last November. She passed away approximately five months after receiving her diagnosis. Her quest to find answers to her “floppy foot,” began over a year ago, which was the initial symptom. With no family history of the disease, she spent over a year going to doctor appointments, actively searching for answers. She was determined to get her life back, visiting her PCP multiple times and seeking answers from several neurologists. She was told it was due to a nerve compression in her spine and untreated scoliosis, was scheduled for surgery, and she was hopeful. She endured the surgery and subsequent rehab isolated from her family, but, unbeknownst to her, she was entering a battle for which she was not given the ammunition. We need to do better. ALS patients deserve better. Due to her diagnosis of advanced-stage ALS, she was unable to participate in clinical trials. Providing more funding to create more opportunities for clinical trials, including trials for all stages of ALS, is essential. My Mom would have participated in any type of trial that might stop or slow the progression of her condition, anything that could provide some kind of hope for her. My mom, like most ALS patients, had been healthy her whole life, and she faced the news of her ALS diagnosis courageously. She fought to the best of her ability, at 79 years of age, against this brutal disease but also had to contend with the denial of services by Medicare that was so needed, such as PT, OT, speech, and respiratory therapy. CMS determined that she would not benefit from these services, although fiercely advocated by ALS specialists. She deserved every tool available to fight this disease and to be given the appropriate equipment in her arsenal. She was so much more than her member ID. Her mind remained unchanged during all of this as she gave witness to what ALS was doing to her body. She was unable to talk, hug her family, cry, or even scream over the frustration of it all. There is nothing more heartbreaking. Our family was also faced with the costs of providing 24-hour care to meet the needs of her rapidly declining health. I applied for grants and assistance where I could, but the financial costs, even with her long-term care insurance, could not keep up with the overwhelming burden. The cost of bringing in aides to help with her care in her last few months cost $35,000. For many families, covering these types of medically necessary costs is problematic, as these are unforeseeable circumstances that are difficult to plan for in retirement or at any point during one’s lifetime. How does ALS affect my life? It took away an irreplaceable part of my light, laughter, joy, and a piece of my heart. Her case can never be an example of what others should go through. We have the doctors, the services, and the specialists available to make ALS a livable disease by 2030. What we are missing is funding for research, awareness, educating, and training for PCPs, treatments and insurance benefits to aid those in their battle. My mom was not given a fair fight, she had more to contribute, more love to share, and more people to inspire. ALS might have won in her battle, but I am now her voice and I will fiercely advocate and continue the fight against this disease for her and others.

In the month of March of my sophomore year in high school, my mother lost her ability to walk out of nowhere. It was later confirmed in the summer that my mother had ALS. Due to her diagnosis of ALS my mother was no longer able to work as she was unable to do what was required of her to do. With my mother no longer able to work that meant that my father was the only person in the household to have a job and earn some kind of income for my family. A year later, during my junior year of high school, everything shut down due to the coronavirus. Covid had a horrific effect on my family, as it had on others. Everyone in my family became ill. My father, unfortunately, took the brunt of it. On November 15th, 2020, my family received word from the hospital that my father had died of covid. Because my father was our family's primary source of income, we lost the majority of our assets when he died. After my father's passing my mother's health continued to rapidly decline due to ALS. She was continuously in and out of the hospital, she had a trache placed inside of her, she became completely paralyzed from the waist down, she lost her ability to write and talk to others, and she has been placed on a full-time ventilator as her lungs are not strong enough for her breathe on their own. In the month of September, my mother was officially placed on hospice. My family has been told by her doctor that any day could be her last day. Earlier this month I was strongly advised to go back home to say my final goodbyes as the end looks very near for her and the doctors didn't want me to miss my chance of saying my final goodbyes to my mother while she was still alive. My mother is a very strong fighter but unfortunately, she is currently losing her battle against this horrible disease. ALS has damaged my family for years and its damage is not yet done. This scholarship would affect my career plan in multiple different ways. After college, I would have a bachelor's in multimedia and with that, I want to go into broadcast production. My dream would be to work for ESPN. If I can't work at ESPN then I would love to do broadcast production for the news. The news is a way of communicating with people all over the world, and because this world is regrettably filled with so much negativity, I don't want to convey the bad news; instead, I want to spread the good. I wish to inspire people by educating them about all the good things that are happening in the world. Unfortunately, paying for further education and attending college is very expensive. I won't be able to work for ESPN or the news if I don't have the finances to attend college. After the passing of my father, our family was only allowed to live off of what my mother got from her Survivor Benefits and her Disability each month. The money that my mother got we used towards necessities that we needed to survive so we weren't able to save money for college. The only way I can go to college would be if I get scholarships that pay for everything. Every single scholarship would help and this scholarship would help pay part of my tuition and allow me to further my education in hopes of working in broadcast production.