Project Two: Revised Draft

Anyone who knows me knows I love serving and helping people. I am also constantly smiling and or laughing. By participating in Dance Marathon I did all of the above. It has been proven that smiling can boost a person’s mood, and even their immune system and they say laughter is the best medicine. It can be hard for families to be joyful when these Miracle Children are fighting for their lives, and have to mature quickly because they are faced with pain and suffering. Childhood should be a time of innocence, curiosity, and joy. I stand for future laughs, to give the Miracle Children and their families the hope that they will once have those moments of pure bliss without worrying about their child’s health. I want to help make more smiles, to help make more laughs, to help a child fight their battle. to raise money and awareness for this cause so that the future will be filled with more research, more laughter, more equipment, more heartbeats, and more memories for the kids who are fighting for their lives. As a part of the Dance Marathon family, we are ensuring that no family, no child ever has to worry about getting the help they need. Dance Marathon at FSU is a movement that embodies the hope of future generations to live long and healthy lives. At Dance Marathon at FSU, we dance so that kids can be kids! Whether it be a personal connection or fighting to end pediatric illnesses, we are one family united under one cause. Dance Marathon at FSU believes in helping children fight their battle today in order to see a healthier tomorrow. One donation, no matter the size, has the potential to make such a tremendous impact on the future of a child’s health.

Dance Marathon at Florida State University is a student run philanthropy where students are awake and on their feet for 20 hours to raise money and awareness for our local Children’s Miracle Network Hospital, Shands Children’s Hospital in Gainesville, FL, and FSU’s College of Medicine Pediatric Outreach Programs. For the past 21 years, Dance Marathon has been a Florida State tradition that has raised nearly $8 million for Shands Children’s Hospital and Pediatric Outreach Programs through FSU’s College of Medicine.

Everyone has a different reason for participating in Dance Marathon. Mine is being able to help continue to help provide medical care, treatment, and research in order to make these NICU babies recovery process easier. The NICU and its babies have a special place in my heart because I was a NICU baby. These machines saved my life, and its indescribable to know just by fundraising and raising awareness, I can potentially save their lives. I have loved every minute of Dance Marathon, however since I’m only a freshman, I’ve only been involved with it for a few months, but my passion has deep roots. This past January, I had the incredible opportunity to visit Shands Children's Hospital in Gainesville which is our local Children’s Miracle Network Hospital to actually see the impact I have helped make by fundraising. The money raised could go to anything from Nurse's stations to an entire unit for children who had compromised immune systems (like post Chemo) and any other little or big thing in between (hospital beds, NICU equipment, or even just things to keep kids happy and entertained during their stay).

50% of the funds Dance Marathon at FSU raises goes to FSU’s College of Medicine Pediatric Outreach Programs. The pediatric outreach programs also include, but are not limited to, providing primary health-care for elementary-aged children in schools, who wouldn’t otherwise get these basic needs met, bereavement programs such as Big Bend Hospice, and funding the Neonatal ICU in Tallahassee Memorial Hospital. Dance Marathon provides salaries for local public school nurses in Gadsden County, 30 minutes away from Tallahassee. Gadsden County has one of the lowest health ratings in Florida, and the elementary-aged children in these schools receive uncompensated primary health care by attending school. The past few years the money raised from Dance Marathon has allowed for the Tallahassee Memorial Hospital to open a much needed NICU. NICU stands for Neonatal Intensive Care Unit which helps take care of babies in critical conditions such as prematurity. NICUs make the biggest impact on the babies’ life. This NICU is the only one within 170 miles with the necessary medical equipment such as a neonatal crib, an Infusion Pump and an Infant CPAP machine that has the ability to save the infants lives. “A CPAP machine, which is a continuous positive airway pressure, is another piece of equipment to help (infants) breathe. It gently inflates (the infant’s) lungs and keeps them open. Air goes in through a mask or a tube in (the infant’s) nose.” (BabyCentre Medical Advisory Board). The Infant CPAP machines are used to deliver oxygen to the 20-25% of all neonatal patients who are affected by respiratory diseases; however, they can cost up to $10,000. An infusion pump is “…a medical device that delivers fluids, such as nutrients and medications, into a patient's body in controlled amounts,” (Center for Devices and Radiological Health). These pumps can cost anywhere between $2,380 to $5,982.

Dance Marathon is also big supporter in ensuring the families who benefit from these programs are present during the event, especially families with miracle children. Approximately 25% of all Dance Marathon funds are allocated toward research conducted by doctors at Children’s Miracle Network Hospitals. Miracle Children are the future, and their future relies on a yearlong effort of fundraising.

The Children’s Miracle Network was founded in 1983 and is currently headquartered in Salt Lake City, Utah. It is a non-profit organization that has raised funds and awareness for 170 member hospitals in order to provide 32 million treatments each year to kids across the U.S. and Canada. 62 children enter a Children’s Miracle Network Hospital for treatment every minute. Children’s Miracle Network Hospitals treat 1 in 10 children in North America each year and provides comfort, treatment, and hope to millions of sick youth, whether they suffer from common childhood afflictions such as asthma and broken bones or fight bigger challenges such as birth defects or cancer. Donations stay local to fund critical treatments and healthcare services, pediatric medical equipment and charitable care. Since 1983, Children’s Miracle Network Hospitals has raised more than $5 billion dollars. Its various fundraising partners and programs support the nonprofit’s mission to save and improve the lives of as many children as possible.. The Children’s Miracle Network Hospitals devote 60% of their services to children under age six and 25% to newborns who require the most intensive nursing and medical care of all patients. They provide $2.5 billion in charity (uncompensated) care each year. Cancer is the chief cause of death by disease in children under 15; however, thanks to Children’s Miracle Network Hospitals and Dance Marathon, almost 80% of children with cancer will survive today due to advances in diagnosis and treatment of pediatric cancer. Not only does the Children’s Miracle Network Hospital provide the necessary treatment and care, they also educate families about issues like child safety seats, helmet safety and bicycle safety. (UF Health Shands Children's Hospital or Word, Ron ????) The University of Florida Health Shands Children’s Miracle Network Hospital is the participating hospital for the Gainesville/North Central Florida, Tallahassee/South Georgia and West Palm Beach areas.

Development Associate of the University of Florida Health Shands Children’s Miracle Network Hospital, Lindsay Ritenbaugh, began volunteering as the Morale advisor for DemonTHON, DePaul University’s miracle network Dance Marathon in 2013. When the overall advisor moved schools, she continued to advise DemonTHON executive committee for three years. She became deeply connected to one of the miracle families in the Chicagoland area, and they served as a second family to her while she lived far away from her family in Florida. Spending time and better understanding Mia’s resilience through chemotherapy for an inoperable brain tumor helped Ritenbaugh to better understand the impact that Children’s Miracle Network Hospitals has on the patients and families it benefits directly through Dance Marathon. When asked if she minded sharing her memorable experience with Dance Marathon and/or at Shands Children’s hospital, Ritenbaugh responded with “University of Florida had a goal of raising $262,000 in 26.2 hours, and they completely blew it out of the water and raised $422,557.77! The very next day, Florida Statement brought in an incredible $240,769.60, crushing their goal as well! This was an empowering moment for me, since DemonTHON’s most recent push day had resulted in $48,312.99, and their highest yearlong total was $274,887.77. I knew I was joining a Children’s Miracle Network with three top ten fundraising programs nationally, but seeing over $663,000 collected in 48 hours was breathtaking. Knowing the lifesaving equipment that will be purchased for the kids at Shands and the transformative research that will be conducted at our respective College of Medicines brought literal tears to my eyes. It was at that moment where I realized that {together we can do more} (she adds emphasis in her tone) for the kids at UF Health Shands Children’s Hospital and that Dance Marathon brings together even the biggest of rivals for a shared cause.”

February 24th-26th, 2017 Florida State University held their 22nd annual Dance Marathon. The marathon was a total of 40 hours broken up into two 20 hours shifts, the Garnet Shift on starting Friday afternoon and the Gold Shift starting Saturday afternoon. I participated in the Garnet Shift. WE were told to arrive at the Civic Center at 5:15 for our 5:30 check in. The Opening ceremony started around 6:30 and at 7:00 over 1,000 dancers stood up starting our 20-hour countdown. There are five different levels of involvement. Dancers, Delegates, Captains Core and Management and Executive Board. {During their designated shift, the dancers are encouraged to learn the line dance, enjoy live entertainment, eat great sponsored food, and get to know the miracle families that are directly impacted by Dance Marathon. Delegates are the representatives from each of the participating organizations. They motivate their team, and are the ones who deliver information from the Executive Board and Captains to the members of their organizations. The CORE Team is at the “core” of Dance Marathon. CORE is comprised of 60 specific positions that allow for Dance Marathon related events to happen year-round. The Captain Program is composed of over 200 leaders dedicated to all things Dance Marathon. Being a Captain is a year-long commitment, where each leader is dedicated to advocate for DM at FSU, as well as complete the responsibilities of their respective positions. The Executive Board is comprised of 15 Chair Positions and 5 Management Positions, these leaders dedicate themselves every day to create ways to make miracles for The kids. Each Executive Member leads their Captain Team and 2-5 CORE Members to set and achieve goals,}(Dance Marathon at Florida State University). The Captains, Core, and Management and Executive Board are required to stand all 40 hours of Dance Marathon. Since it was my first year I was just a dancer. (??)

It was a strenuous 20 hours due to the fact we not only had to stand the entire time, but also every hour, on the hour, we would perform a 7-8-minute choreographed line dance taught by some of the members of CORE. A goal I wanted to maintain throughout the marathon was to maintain an optimistic attitude and not complain, not once. That became very difficult since negativity can be just as contagious as positivity. One thing that helped me maintain my positive attitude was once we had performed the line dance each hour, we were allowed to take a knee (which technically isn’t sitting) and we listened to a different miracle family that benefits from the funds raised by Dance Marathon FSU tell their story. During the hours of 12am to 7am, we watched a prerecorded video of a miracle family that benefits from different Dance Marathons form across the country. Anytime I felt negativity begin to have an impact on me, I would think back to the families on stage. I would remember the temporary and discomfit I was experiencing at the time is not even comparable to what these miracle families and children had to go through and in some cases will continue to go through indefinitely. There were three of the miracle children who stood out to me the most: Nate, Parker, and Grayson.

Nate was born with a genetic condition called Mitochondrial Disease, which is a multi-systemic disease resulting in organ dysfunction, Nate has been a patient of UF Health Shands Children's Hospital since his birth. Nate has 9 pediatric specialists at Shands who ensure that Nate can live a fairly normal life despite relying heavily on medical equipment and medications to keep his body functioning properly. (Dance Marathon at Florida State University 2) Nate celebrated his 9th birthday this year at the marathon. Regardless of his circumstances, thanks to the amazing medical team and donations to Children's Miracle Network Hospitals through Dance Marathon, Nate has proven his condition doesn’t stop him from being full of energy and a joyful kid.

Parker was diagnosed with Myelodysplastic Syndrome, a precursor to leukemia, when he was three years old. He was sent to Shands Hospital where he went through high dose chemotherapy and total body radiation in preparation for a Bone Marrow Transplant using new cord blood. After 28 radiation treatments and 14 days of high dose chemo, he had a bone marrow transplant at Shands Hospital in Gainesville. He was only the twentieth case using new cord blood in 2002. Once a match was found for Parker in the Northeast United States, it was transported in a cooler to Shands, which cost approximately $20,000. The Children’s Miracle Network and money raised by Dance Marathon were able to cover the treatments Parker needed, and therefore he was never diagnosed with leukemia. After staying at Shands for three months, a representative from Children’s Miracle Network reached out to the Parker’s family asking Parker if he would like to be a miracle child. (Dance Marathon at Florida State University 2) Today, Parker is in his 14th year of remission, and has been an FSU miracle child for 15 years. Since Parker is one of the older miracle children he was the one to tell his story. “The students in the marathon have a big impact because they are very young people just knowing that they have this impact on life- when they see the miracle balloon at Walmart or at a store and the think, ‘I made that and I made a purpose for either Parker or another miracle child.’ It has a really long lasting effect on themselves as well.” Parker said. “Every year when we know the date of FSU’s Dance Marathon we circle it and make sure that nothing will interfere with that weekend, it’s my favorite weekend of the year. It’s just fun to hang out with the dancers and doing Parker’s purpose for the past few years.” (Parker Fox) Parker’s Purpose is a fundraiser push during Dance Marathon. Parker challenges the dancers to raise a certain amount of money for just a few hours and then he reveals the total the following afternoon. This year, during the Garnet Shift, he revealed Parker’s purpose raised over $30,000.

Grayson Irwin was only 11 months old when the Irwin’s were called into their pediatrician’s office to learn that Grayson’s body appeared to be showing signs of leukemia, and Shands Children’s Hospital in Gainesville was expecting their arrival from Tallahassee. Shortly after arriving at Shands, Grayson was diagnosed with Infant T-Cell Acute Lymphoblastic Leukemia, a type of blood cancer that starts from white blood cells in the bone marrow and can spread throughout the body to other organs. He was given a 10% survival rate. Now, Grayson is four years old, and was able to celebrate one-year cancer free in August of 2016. (Dance Marathon at Florida State University 2)

Grayson's mother, Janelle says, “The sounds of the machines you dread, but the lifesaving medication its providing your infant son is humbling. Chemotherapy. To kill the cancer that has left your child with a prognosis of a 10% chance of survival. Doctors, nurses, child life specialists, researchers, volunteers, and therapists, filter in and out of the room on a rotating basis throughout the day, reminding you that even amidst the most daunting of enemies, an army stand on your side, and behind that army stand funding, and resources making even statistics and prognosis’s quiver in fear.” “A quiet thank you slips from my lips... Thank you for the equipment that is saving my son’s life, one medication at a time, a thank you for the researchers devoting their lives to finding a cure. A thank you to the staff and personnel that offer a simple ‘can I get you anything’ to go along with caring for my little boy. A thank you for the hospital walls that surround us, and the comfort knowing we are in the right place receiving the best treatment possible, and a thank you to the Children’s Miracle Network who nods in agreement with my son and says ‘not today sweet momma, cancer doesn’t stand a chance.’ Research is coming a long way and Grayson is living proof of that,” Janelle said. “I am so thankful for Children’s Miracle Network for playing such a huge role in allowing me to be able to celebrate my son’s birthday,” (Janelle Irwin).

This past year Dance Marathon set a goal of 1.7 million dollars and we were able to raise $1,830,167.28 dollars for the kids. The weekend of February 20-26 a total of 29 programs hosted their individual Dance Marathons and raise a grand total of $4,760,940.90, the highest fundraising weekend in the Children’s Miracle Network Dance Marathon history. Knowing that all the efforts put towards DM is 100% worth it, and that I am capable of making a difference in the lives of not just the sweet kids, but anyone who benefits from Dance Marathon really warms my heart. No child should stand alone: I stand for those who can’t.