Enduring neuroblastoma diagnosis with daughter Leah helped Devon Still find a purpose and passion for life after football


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: Neuroblastoma

Brief Description: A childhood or pediatric form of cancer that occurs in the abdomen near the adrenal glands, but it can also occur in other parts of the body. It is often present at birth but may not be detected until later in infancy or childhood. The symptoms of a neuroblastoma may include a lump in the abdomen, pain, diarrhea, or generally feeling unwell. It affects one out of 100,000 children. The exact cause of this tumor is not yet known. Treatment may involve surgery, chemotherapy, radiation therapy and stem cell transplant, and it can be cured when diagnosed at an early stage.

Rare Connection: Former Penn State All-American and Big Ten Defensive Player of the Year Devon Still was battling through his own injury issues to keep his NFL career alive when his then 4-year-old daughter, Leah, was diagnosed with the rare disease neuroblastoma. Leah’s diagnosis made playing football irrelevant to Still. At that moment, he was prepared to walk away from the game to be with his daughter full-time, but realized keeping his health insurance was best for her. With the support of the Cincinnati Bengals, Still decided to use his platform as an NFL player to shine a spotlight on pediatric cancer. Devon used social media to document Leah’s battle with neuroblastoma, quickly raised more than $1 million for research through jersey sales, and the inspiring duo was awarded the Jimmy V Award at the 2015 ESPYs. As a member of the Penn State Chapter during his Nittany Lions career, Still reached out to Uplifting Athletes Executive Director Scott Shirley shortly after Leah’s diagnosis. Scott was a source of support and together they launched a Pledge It campaign to raise funds for research. Leah has been in remission for three years, and after stops in Houston and New York, Still retired from the NFL after the 2017 season. Leah is healthy today, but Devon is far from done using his platform to help others. Since retiring, he launched the Still Strong Foundation to help families with children fighting pediatric cancers and to share his story and hopefully motivate others to fight through their challenges. In Devon’s words he wants to “have an impact that goes well beyond the football field.”

Patient Groups: Children’s Neuroblastoma Cancer Foundation, American Cancer Society.

Getting Social: Twitter: @CncfHope, @AmericanCancer. Facebook: CNCF Hope, American Cancer Society.

Learn More: There are two FDA approved treatments for neuroblastoma, Adreview and Unituxin, and more than 500 clinical trials. To learn more about clinical trials go here. 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.

 

 

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.

 

Extensive battle with rare bone cancer Osteosarcoma could not keep Casey O’Brien off the football field


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: Osteosarcoma

Brief Description: From among the many forms of rare bone cancers, osteosarcoma is considered the most common type of bone cancer. The average age at diagnosis is 15. Boys and girls have a similar incidence of this tumor until late adolescence, at which time boys are more commonly affected. It is considered even more rare for osteosarcoma to occur in adults. Although osteosarcoma tends to occur in the larger bones, such as the shin (near the knee), thigh (near the knee) and upper arm (near the shoulder), it can occur in any bone. A number of variants of osteosarcoma exist. The cause of osteosarcoma is not known. In some cases, it runs in families, and at least one gene has been linked to increased risk. Treatment varies from person to person and may include surgery, chemotherapy, radiation therapy and samarium.

Rare Connection: There was a nagging soreness in his left knee that 2018 Uplifting Athletes Rare Disease Champion Award finalist Casey O’Brien figured he could play through. He’d figure it out after his high school freshman football season was over. He was the quarterback, and he wasn’t hurt. So he played. The pain did not go away and his father, Dan, was concerned. A series of x-rays and tests didn’t reveal anything, so O’Brien charged forward and went into high school hockey tryouts. Only problem was he could no longer skate because of the lingering pain in his knee. Another round of tests, including an MRI, revealed the deeper problem. O’Brien, who remembers that Friday vividly, was diagnosed with osteosarcoma. By Monday he had the first of what would be become 10 surgeries and more than 150 days in the hospital over an 18-month span. All those days in the hospital gave the resilient O’Brien plenty of time to think. A three-sport athlete growing up, sports was all O’Brien knew. He loved football the most, and wanted to get back on the field, but his options were limited. One night, while lying in a hospital bed receiving another round of treatment, O’Brien and his father hatched up a plan. While enduring ongoing chemotherapy treatment, O’Brien played for Cretin-Derham Hall High School as a holder despite being only 115 pounds and bald. His playing schedule was two weeks on and week off to mirror his treatment schedule. A late-night plan hatched in a hospital bed played out for two seasons at Cretin-Derham Hall High School and continues today… Just last year, Casey O’Brien earned a spot on the University of Minnesota Gophers football squad as a walk-on holder.

Patient Groups: Sarcoma Alliance, Sarcoma Foundation of America, The Liddy Shriver Sarcoma Initiative.

Getting Social: Twitter: @SarcomaAlliance, @CureSarcoma Facebook: Sarcoma Alliance, Sarcoma Foundation of America

Learn More: There are three FDA approved treatments for osteosarcoma, Fusilev, Leucovorin calcium and Methotrexate. To learn more about clinical trials go here. 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.

Anaplastic Astrocytoma diagnosis provided motivation for Syracuse football program to tackle rare diseases


RARE DISEASE SPOTLIGHT GRAPHICThere are more than 7,000 different 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: Anaplastic Astrocytoma

Brief Description: Anaplastic astrocytoma is a rare malignant brain tumor. Astrocytomas are tumors that develop from certain star-shaped brain cells called astrocytes. Astrocytes and similar cells form tissue that surrounds and protects other nerve cells found within the brain and spinal cord. Astrocytomas are classified according to a grading system developed by the World Health Organization (WHO). Astrocytomas come in four grades based upon how fast the cells are reproducing and that likelihood that they will spread. The exact cause is unknown, and it tends to affect adults more than children and males over females.

Rare Connection: Former Syracuse punter Rob Long was diagnosed with Grade III Anaplastic Astrocytoma 5 after days the final game of his senior season. Bound for the NFL as one of the best punters in the college football, Long was suddenly in a fight for his life. The standard prognosis for a Grade III diagnosis like Rob’s is an expected life span of 3-5 years. The harrowing news did not deter Rob. It motivated him to literally fight for his life. That fight served as an inspiration to many in Rob’s circle of life – including his teammates at Syracuse. Using Rob as an inspiration, several members of the Orange football team, led by Sam Rodgers, put in the hard work and time to form an Uplifting Athletes Chapter on campus to inspire their teammate with hope and let him know they were doing everything they could to support him.  Although, the long and winding battle to become cancer free cost Rob his NFL career opportunity, it opened another door that allows him to fulfill his passion – helping and serving others in the rare disease community. Rob is a former rare disease patient, a rare disease survivor and works daily to help strengthen the bond between college football and the rare disease community as the Director of Strategic Development for Uplifting Athletes.

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Patient Groups: American Brain Tumor Association, National Brain Tumor Society, American Cancer Society, Brain Tumor Foundation For Children.

Getting Social: Twitter: @theABTA, @NBTStweets, @AmericanCancer, Facebook: ABTA, braintumorfoundation, AmericanCancerSociety, BTFC.

Learn More: There is currently one FDA approved treatment for Anaplastic Astrocytoma. However, there currently is no cure. 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.