Beyond The Finalist: Get to know Kent State University wide receiver Antwan Dixon


DIXON 1819 FINALIST GRAPHICThe Uplifting Athletes Rare Disease Champion Award, part of the National College Football Awards Association (NCFAA), is given annually to a leader in college football who has realized his or her potential to make a positive and lasting impact on the Rare Disease Community.

We afforded each finalist for the 11th Rare Disease Champion Award the opportunity to be featured in our Beyond The Finalist series.

Name: Antwan Dixon

University: Kent State University

Position: Wide Receiver

What about your journey do you always make sure to share when telling your story?

Dixon: When telling my story I make sure people know about all the obstacles I had to overcome to get back to where I am now. I know this doesn’t answer the question but I don’t tell everyone enough about my mother (Shemariah Dixon). Even though my dad was my donor, I know if my mom was put in that position she would have done it with no hesitation. She was literally with me every single day that she could. Missing weeks of work and if she did go to work, she was trying to get back as fast as possible. There were many nights she didn’t sleep because I couldn’t sleep and I wish she could win an award for everything she did for me. But I know she feels she’s got an award in me still being on this earth.

Can you tell us your ‘welcome to college football (either as a player or coach) moment’?

Dixon: My ‘welcome to college football moment’ was at our first home game against Delaware State. It was my second game, the second series of the game I got my first career reception on a screen toward the middle for a touchdown.

What is the one piece of advice or encouragement that’s stuck with you over time? Who gave it to you and what is it?

Dixon: My mom told me, after I didn’t run my fastest on play when I was younger, if you don’t use your gift that God gave you then it can be taken away from me at any time.

What is your favorite movie and why?

Dixon: Bad Boy II is my favorite movie because Martin Lawrence and Will Smith are great actors together and I love action comedies.

If you could have lunch with any one person (dead or alive), who would you choose and why?

Dixon: I would have lunch with Inky Johnson. He is a great speaker and has been through a lot. I want to be a motivational speaker as well. It would be an honor to meet him.

Your favorite aspect of being a part of college football?

Dixon: I love being a role model. The kids after the game shaking your hand is my favorite aspect. Win or Lose, they still want to be like you and look up to you.

Last few songs you downloaded?

Dixon: Homebody by Lil Durk ft. TK Kravitz & Gunna; Every Season by Roddy Rich; Life Goes On by Lil Baby

What would winning the Uplifting Athletes Rare Disease Champion Award mean to you?

Dixon: Winning the Uplifting Athletes Rare Disease Champion Award would mean a lot to me because it means that my story has reached many individuals around the world that may need an inspiration. I’ve met some great people throughout my journey and it would be a great accomplishment for me considering what I’ve been through. Being a nominee for this award is great too. Reading the stories of the other men makes it a honor for me to be in the running for this award with them.

Beyond The Finalist: Get to know University of Illinois offensive lineman Nick Allegretti


ALLEGRETTI 1819 FINALIST GRAPHICThe Uplifting Athletes Rare Disease Champion Award, part of the National College Football Awards Association (NCFAA), is given annually to a leader in college football who has realized his or her potential to make a positive and lasting impact on the Rare Disease Community.

We afforded each finalist for the 11th Rare Disease Champion Award the opportunity to be featured in our Beyond The Finalist series.

Name: Nick Allegretti

University: University of Illinois

Position: Offensive Line

What about your journey do you always make sure to share when telling your story?

Allegretti: When my brother was diagnosed with his rare disease, I was extremely scared to hear the word cancer and as a young child and I was afraid of all of the negative things that would come with it. However, the doctors and my parents assured me that the treatment plan would get rid of his tumor and there would be nothing to worry about. I believed in this and after years of battling my brother was cured. As a naïve child I believed that this was how all illnesses worked and I did not realize that many people were turned away without a treatment plan. When I realized this, I finally understood how important the work that Uplifting Athletes is doing was to the Rare Disease Community and I knew that I had to help in any way possible.

Can you tell us your ‘welcome to college football (either as a player or coach) moment’?

Allegretti: I can remember the first time we had “optional workouts” over my first summer. In high school I played many sports and had multiple extra curriculars that would conflict with certain sports optional workouts. As a college athlete you have school and then football, and if it’s not class…it’s not a conflict.

What is the one piece of advice or encouragement that’s stuck with you over time? Who gave it to you and what is it?

Allegretti: As a true freshman we were playing a game at Nebraska, which is an electric environment and I remember our offensive coordinator, Bill Cubit, telling us before the game to enjoy the moment and realize the magnitude of the event. From that game on I always tried to take a few seconds out of every game to truly understand how special playing college football is and how much it has meant to me.

What is your favorite movie and why?

Allegretti: Four Brothers – It is a movie about a group of four adopted brothers trying to avenge their mother’s death. I have probably seen some better movies before, but the connection that the brothers share is similar to the relationship that I have with my brother. And the family aspect of the movie, although quite violent, is one of a kind.

If you could have lunch with any one person (dead or alive), who would you choose and why?

Allegretti: Alexander Hamilton – He is one of the founding fathers of our country and the first ever Secretary of Treasury and is largely responsible for the beginning of our country’s monetary system. As a coin collector that would go on the study and collect this system, I am very appreciative.

Your favorite aspect of being a part of college football?

Allegretti: My favorite part about being a college football player is the camaraderie that is built with your teammates. When you commit to a university, you usually know very few players and their backgrounds but by the end of your time you have built hundreds of relationships with people you never would have met without college football. And a lot of these relationships will last for life.

Last few songs you downloaded?

Allegretti: My Top 5 songs: The Devil Went Down to Georgia – Charlie Daniels Band; It’s a Great Day to Be Alive – Travis Tritt; In Color – Jamie Johnson; Watching You – Rodney Atkins; Springsteen – Eric Church

What would winning the Uplifting Athletes Rare Disease Champion Award mean to you?

Allegretti: Winning this award would mean the world to me. From working with uplifting athletes over the past four years I have met some incredible people and heard some unbelievable stories within the organization. I have also learned how helpful Uplifting Athletes is for the Rare Disease Community and how important it is to spread the word to continue battling rare diseases. To be able to represent this organization and community as the Rare Disease Champion would be an incredible honor.

Uplifting Athletes announces five finalists to determine 11th winner of the Rare Disease Champion Award


RDC 1819 GRAPHIC 1Uplifting Athletes is pleased to announce that five finalists have been chosen for the 11th Rare Disease Champion Award winner.

The Uplifting Athletes Rare Disease Champion Award, part of the National College Football Awards Association (NCFAA), is given annually to a leader in college football who has realized his or her potential to make a positive and lasting impact on the Rare Disease Community.

Nominees for the award were solicited from any NCAA FBS, FCS, Division II or Division III institution or college football program nationwide.

The five finalists chosen to determine the 11th winner of the award are: Illinois offensive lineman Nick Allegretti, Stanford linebacker Ryan Beecher, Kent State wide receiver Antwan Dixon, Austin Peay offensive coordinator Joshua Eargle and Syracuse offensive lineman Sam Heckel.

“We are privileged to recognize these five finalists and are humbled to share their stories,” said Uplifting Athletes Executive Director Rob Long. “We are excited to see who the public chooses as our 11th Rare Disease Champion, but we know all five of these finalists would make a great winner.”

A public online vote will be live from noon November 12th until midnight December 4th to determine this year’s Rare Disease Champion. You can vote once each day for your favorite finalist on the Uplifting Athletes Rare Disease Champion website.

The finalist with the most votes after voting closes at midnight on December 4th will be the winner. The champion will be officially announced on the red carpet from the Home Depot College Football Awards Show on December 6th.

Uplifting Athletes’ 11th Rare Disease Champion will be honored as part of the Maxwell Football Club Awards Gala on March 8th in Atlantic City, New Jersey at the Tropicana Casino & Resort and as part of the Uplifting Athletes Young Investigator Draft/Rare Disease Champion Celebration on March 9th at Lincoln Financial Field in Philadelphia.

Past Rare Disease Champion winners include seven FBS players, one FCS player, a Division III quarterback and an administrator from AFCA.

Former UCF and current Seattle Seahawks linebacker Shaquem Griffin was the 10th winner of the Rare Disease Champion Award.

 

 

 

Mitchell Meyers came all the way back from 18-month battle with a rare disease to play his final season at Iowa State and win the 2017 Rare Disease Champion Award


RARE DISEASE SPOTLIGHT GRAPHIC

There are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.

Rare Disease: Hodgkin’s disease

Brief Description: Hodgkin’s disease is one of a group of cancers known as a lymphoma – a general term used to describe cancers that affect the lymphatic system, especially the lymph nodes. Tumors often form in the lymph nodes and/or the area around the nodes. The exact cause of Hodgkin’s disease is unknown, but some classic symptoms include fever, night sweats, and weight loss may occur along with swollen lymph nodes. Hodgkin’s disease affects the tissues and lymph nodes of the lymphatic system. The lymphatic system, which is part of the body’s immune system, consists of a complex series of thin vessels that are similar to blood vessels and run throughout the body. Treatment of Hodgkin’s disease depends on the stage of the disease. Radiotherapy and chemotherapy are the two main treatment options.

Rare Connection: Former Iowa State defensive lineman Mitchell Meyers became the ninth winner of the Rare Disease Champion award in 2017. Meyers endured a long and difficult 18-month journey with the rare disease Hodgkin’s lymphoma. An impact player in 2013 and 2014 for the Cyclones football team, Meyers lost his 2015 season when he was diagnosed in February of that year. He left school and returned home to Texas to begin his fight. He vowed to his teammates he would return for the 2016 season. During his 13 months of chemotherapy and radiation treatment, Meyers suffered a serious setback when he became one of those rare patients who had a relapse. He went through a stem cell transplant early in 2016, and playing football again became less of a reality with each passing month. But Meyers never gave up. He did what he could to keep his body in shape, despite losing more than 50 pounds, with the commitment to overcome the odds and play again. Just prior to preseason camp for the 2016 season, Meyers hard work paid off and he was cleared to practice.   But he had been away from the game for 18 months. With nothing promised to him by the coaching staff other than an opportunity to compete, Meyers went out and won a starting job at defensive end and served as an inspiration for his Cyclone teammates. He was voted as a team captain for the 2017 Iowa State team and wore the No. 58 for the Cyclones that year. Each season Iowa State hands the No. 58 jersey to a lineman who best embodies the spirit of a beloved former coach who died suddenly in 2014. Meyers not only earned a starting spot, he became a big-time contributor up front defensively for the Cyclones, playing in all 12 games, recording 30 tackles and becoming an Academic All-Big 12 selection. Currently, Meyers is working for Houston-based Crane Logistics in their year-long Leadership Development Trainee program.

Patient Groups: American Cancer Society, Cancer Support Community, Leukemia & Lymphoma Society, Lymphoma Research Foundation.

Getting Social: Twitter: @AmericanCancer, @CancerSupportHQ, @LLSusa, @lymphoma. Facebook: American Cancer Society, Cancer Support Community, The Leukemia & Lymphoma Society, Lymphoma Community.

Learn More: There is one FDA approved treatments for Hodgkin’s lymphoma, Leukine. To learn more about clinical trials go here. Currently there are more than 1,100 active clinical trials for Hodgkin’s disease. Some of the most well-respected resources inside the rare disease community include National Institute of Health (NIH), National Organization for Rare Disorders (NORD) and Global Genes.

 

Believing the impossible was possible fueled Shaquem Griffin to cusp of making NFL history


RARE DISEASE SPOTLIGHT GRAPHICThere are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.

Rare Disease: Amniotic Band Syndrome

Brief Description: Amniotic band syndrome is a condition potentially associated with a variety of different birth defects. It is important to note that no two cases of amniotic band syndrome are exactly alike and that the associated symptoms are highly variable. The severity of amniotic band syndrome can range from a single, isolated finding to multiple, disfiguring complications. The arms and legs are most often affected. The head and face and, in some cases, various internal organs can also be affected. Amniotic band syndrome is estimated to occur in anywhere from 1 in 1,200 to 15,000 live births. No gender or ethnic predispositions have been identified with amniotic band syndrome. The symptoms vary greatly from one infant to another. Some infants develop only mild complications; others develop severe and even life-threatening complications. Most infants with amniotic band syndrome have some form of deformity of the arms and legs or fingers and toes. One or more limbs may be affected. Upper limbs are affected more often than lower limbs. In some cases, one limb or one hand or foot may be the only symptom of the disorder.

Rare Connection: University of Central Florida (UCF) linebacker Shaquem Griffin recently won the 2018 Uplifting Athletes Rare Disease Champion award. A Florida native, Griffin was born with amniotic band syndrome. As a youngster, Griffin tried to “play through” the pain. But, the pain became unbearable and the decision was made to remove his left hand when he was four years old. In every phase of life, Griffin refused to let his rare disorder slow him down or hold him back — especially on the football field as a UCF Knight. The star linebacker was named the 2016 American Athletic Conference Defensive Player of the Year in his first full season as starter. This season, he was a big-time impact player for the UCF defense and he helped guide the Knights to a conference championship and, most impressively, a perfect 13-0 season with a victory over Auburn in a coveted New Year’s Six bowl. Griffin’s dream of joining his twin brother, Shaquill, in the NFL is close to becoming a reality. Shaquem had an outstanding week at the Senior Bowl and within the last week received an invitation to the 2018 NFL Combine.

WATCH: The Pain Shaquem Griffin Can Never Forget, College GameDay ESPN

Patient Groups: Birth Defect Research For Children, Fetal Hope Foundation, The Fetal Medicine Foundation, Genetic and Rare Disease Information Center.

Getting Social: Twitter: @ORDR, @BirthDefectRch, @FetalHealthFndn Facebook: ORDR, BDRCFL, FetalHealth.

Learn More: The treatment of infants and children with amniotic band syndrome is symptomatic and supportive. For more information, go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH) and National Organization for Rare Diseases (NORD). A strong patient community to help makes a difference exists through Global Genes.

 

GRIFFIN RDC WINNER GRAPHIC 18

 

Losing his sight to retinoblastoma never stopped Rare Disease Champion Jake Olson from playing football for USC Trojans


RARE DISEASE SPOTLIGHT GRAPHICThere are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.

Rare Disease: Retinoblastoma

Brief Description: Retinoblastoma is an extremely rare malignant tumor that develops in the nerve-rich layers that line the back of the eyes (retina). The retina is a thin layer of nerve cells that senses light and converts it into nerve signals, which are then relayed to the brain through the optic nerve. Retinoblastoma is most commonly diagnosed in children under the age of three. Though most children survive this cancer, they may lose their vision in the affected eye or eyes or need to have the eye or eyes removed. The treatment of retinoblastoma is directed first toward preserving life and then preserving vision in the affected eye or eyes. Treatment is highly personalized, which means one affected individual may receive significantly different treatment than another individual.

Rare Connection: USC long snapper Jake Olson was the 2016 Uplifting Athletes Rare Disease Champion. Olson was born with retinoblastoma, a cancer of the eyes. He lost his left eye when he was 10 months old and despite numerous procedures on his right eye, he lost his sight completely to this rare disease in 2009 when he was 12 years old. A huge Trojans fan all his life, Olson tried to watch as much USC football as possible before losing his sight in 2009. When former USC coach Pete Carroll learned of Olson’s story he invited him to practices. Carroll took it a step further when he made Jake an honorary member of the team. The loss of his sight never slowed Olson down as he continued to flourish on so many levels. During his final two years of high school, Olson was the varsity long snapper for the football team at Orange Lutheran and also played on the varsity golf team. And in 2015 he earned a roster spot on the team he grew up loving, the USC Trojans. This past season, Olson made his first appearance in a game for USC when he snapped for an extra point against Western Michigan. In addition to being a student-athlete at USC, Olson is a published author and dynamic public speaker.

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Patient Groups: American Childhood Cancer Association, Childhood Eye Cancer Trust, American Cancer Society, Rare Cancer Alliance, World Eye Cancer Hope,

Getting Social: Twitter: @wechope, @accorg, @AmericanCancer Facebook: americanchildhoodcancer, AmericanCancerSociety, wechope.

Learn More: There are currently four FDA approved drug for retinoblastoma, Clafen, Cyclophosphamide, Cytoxan and Neosar. For more information about clinical trials, go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH) and National Organization for Rare Diseases (NORD). A strong patient community to help makes a difference exists through Global Genes.

UCF linebacker Shaquem Griffin becomes 10th Uplifting Athletes Rare Disease Champion Award winner


GRIFFIN RDC WINNER GRAPHIC 18UCF linebacker Shaquem Griffin became the 10th winner of the Uplifting Athletes Rare Disease Champion Award.

Griffin earned more votes than any of the other three 2018 finalists in a public online vote that started last month and saw more than 10,000 total votes cast.

The Knights’ senior outlasted a field of finalists that included: Minnesota holder Casey O’Brien, Louisiana Tech running back Jaqwis Dancy and Syracuse quarterback Zack Mahoney.

“Congratulations to Shaquem on becoming this season’s Rare Disease Champion. His uplifting story embodies the spirit of all the finalists and nominees,” Uplifting Athletes Executive Director Scott Shirley said. “All of our champions have had a unique way of leveraging their personal experiences to make a positive impact on the rare disease community and I’m proud of Shaquem leading by example.”

The Rare Disease Champion Award is presented annually by Uplifting Athletes to a leader in the world of college football who has realized his or her potential to make a positive and lasting impact on the rare disease community.

Griffin will be presented the 2018 Rare Disease Champion trophy at the Maxwell Football Club Awards Gala on March 9th at The Tropicana Casino and Resort in Atlantic City.

A Florida native, Griffin was born with the rare disorder amniotic band syndrome. As a youngster, Griffin tried to “play through” the pain. But, the pain became unbearable and the decision was made to remove his left hand when he was four years old.

In every phase of life, Griffin refused to let his rare disease to slow him down or hold him back — especially on the football field as a Knight. The star linebacker was named the 2016 American Athletic Conference Defensive Player of the Year. This season he was nominated for the Allstate Good Works Team that honors football student-athletes for their community service, as well as, the Butkus, Nagurski and Bednarik awards for his play on the field for the undefeated Knights.

Griffin works with Limbitless Solutions at UCF to help children who have a need for prosthetic limbs. He also speaks to children with disabilities of all types as often as possible, and he performs a great deal of community service work not tied to his particular rare disease.