Join Uplifting Athletes at Maxwell Football Club Awards Gala to honor 2018 Rare Disease Champion Shaquem Griffin from UCF


MAXWELL GRAPHICFor the sixth consecutive year Uplifting Athletes will honor its Rare Disease Champion at the Maxwell Football Club Awards Gala in Atlantic City.

And we want you to join us for the celebration on March 8-9 at the Tropicana Casino & Resort on the boardwalk for all the fun as we honor 2018 Rare Disease Champion Shaquem Griffin from UCF.

The former UCF Knights linebacker will join Super Bowl Champion coach Doug Pederson and quarterback Carson Wentz of the Philadelphia Eagles on stage as part of Maxwell’s 81st class of award winners.

We’re excited to share that Griffin will receive his trophy from 2016 Rare Disease Champion Jake Olson from USC.

Uplifting Athletes has limited sponsorship packages available for Maxwell. We extend to you the chance to contribute to our most significant opportunity to raise awareness for the rare disease community and to inspire them with hope along side plenty of football greats past and present.

For more information about this exciting and unique opportunity please contact Uplifting Athletes Director of Strategic Development Rob Long at rob.long@upliftingathletes.org.

 

More than 20 NFL prospects team up with Uplifting Athletes for 2018 Reps For Rare Diseases


RFRD 18 GRAPHICFor the third consecutive year, Uplifting Athletes and current NFL prospects are teaming up to raise funds and awareness to support the rare disease community.

On one of the biggest days of their life, competing in either the NFL Combine or their Individual Pro Day, more than 20 NFL prospects made a choice to use their performance to help others by participating in Uplifting Athletes’ Reps For Rare Diseases.

“Uplifting Athletes is an organization built on the foundation of good people helping other people. Our Reps for Rare Diseases campaign is another example of this,” Uplifting Athletes Director of Chapter Development and NFL veteran Brett Brackett said. ““We would like to thank all the athletes participating in Reps For Rare Diseases and wish them all the best of luck in the pursuit of their professional careers.”

Fans and supporters can become teammates of any of our participants this year and help Uplifting Athletes tackle rare diseases by simply making a pledge based on each individual’s performance.

Visit the Uplifting Athletes Reps For Rare Diseases 2018 team landing page, choose your favorite player and make your pledge today.

The proceeds from this Reps For Rare Diseases campaign support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

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

 

Leadership Development Conference ’18 featured a little bit of everything for nearly 40 college football student-athletes


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For nearly a decade, Uplifting Athletes has been bringing college football student-athletes leaders together for a weekend of training and development.

Last week nearly 40 student-athletes traveled to Atlanta for the 2018 Leadership Development Conference hosted by Uplifting Athletes and put together by Director of Chapter Development Brett Brackett.

“The 2018 Uplifting Athletes Leadership Development Conference was a tremendous success. I left the conference energized by the focus and determination in this group of student-athletes,” Brackett said. “Despite their hectic lives they took time to develop leadership and transferable skills while learning how they can work with Uplifting Athletes to leverage their platform to inspire the Rare Disease Community with hope.”

Following a meet-and-greet dinner Friday night, the conference kicked off Saturday with a full day of programming Saturday that was driven by Uplifting Athletes four pillars – Uplifting Leaders, Uplifting Experiences, Rare Disease Awareness and Rare Disease Research.

One of the many highlights from the student-athlete’s perspective was the discussion with the panel of former student-athlete who are now professionals.

Eight former college student-athletes from the Atlanta area took on all questions about transitioning from college into the professional world.

“The best part of the weekend was having the former student-athlete panel. Being a student-athlete is a privilege and requires a tremendous amount of time and effort. But eventually football will end. We all need a plan of action when that happens,” Syracuse Chapter leader Nolan Cooney said. “Having the former athletes speak to us, was an incredible opportunity to hear from players that are now having incredible success in the corporate world.

“There was no sugar coating the conversation, it was powerful, funny and engaging. Having athletes from various schools, with totally different lives created a connection with everybody in the room.”

Uplifting Athletes Director of Strategic Development Rob Long is a former rare disease patient and college football player. Sharing his story allowed the student-athletes to develop a more personal connection to the cause prior to a visit to the Scottish Rite Hospital for an afternoon of visiting with rare disease patients.

Sunday began with a session on fundraising followed by a video review of Uplifting Athletes 2017.

The conference closed with Beth Nguyen, a NORD Rare Impact Award Honoree, sharing her story. Nguyen battles the rare disease Syringomyelia and is a mother, nurse, wife, patient advocate and leader.

A special thank you to all our supporters who made this conference possible. These young men are making a difference in the rare disease community with your help.

We asked a few of the student-athletes to provide us with some feedback, and what we received was not only helpful to us going forward, but it moved us.

So we are going to share the exact words of two attendees, Cooney and Trey Klock from Northwestern, about what Leadership Development Conference ’18 meant to them.

Uplifting Athletes: In your own words sum up your experience at the Leadership Development Conference and share something that moved or impacted you?

Cooney: This year’s Uplifting Athletes Leadership Development Conference was an incredible opportunity to further my knowledge on what Uplifting Athletes does to not only impact the lives of rare disease patients but as well for the student-athletes. The conference was a great experience to meet and interact with athletes from other universities. Regardless of what school you attend, everybody was sharing very similar stories of their experiences as football players and as leaders of Uplifting Athletes. It is really special to be able to take our on-field competitiveness out of the equation and developed strong relationships with athletes that we play every fall. Uplifting Athletes is continuously growing and adding new chapters. With the new schools at the conference, it created a completely new element to my thinking and ideas. Some of the new chapters were brainstorming ideas that seemed unconventional to the traditional model, but I think that we can use in the future. Atlanta was a great city to host it in. It was really nice to get some heat, after a few weeks in the cold north. I saw a big difference in the conference from the past year in Philadelphia to this year in Atlanta. In Philadelphia, I was fairly new to Uplifting Athletes and I don’t know if I had the confidence to feel that I could make an impact. This year, I felt confident and collaborative. I very much enjoyed the structure of the conference this year. Moving around to the different rooms and touching on the various areas that Uplifting Athletes covers. Then going to the hospital was an experience that you rarely get to have. Typically you raise money and send it in without knowing much about where it is going. By going to the hospital, you are able to see directly where all of our efforts are going to go by interacting with children that are battling a rare disease.

Klock: It was an honor to represent Northwestern football with my teammate Peter Snodgrass at the annual Leadership Development Conference. I made a lot of new friends and enjoyed hearing about the efforts of the new chapters such as Alabama, Western Michigan, Davidson, Lehigh, and others. This was my third Leadership Development Conference and I continued to learn a lot about what we can do as student-athletes to raise awareness and money to fight rare diseases. I enjoyed meeting Brett Brackett and talking more with Scott (Shirley), Rob, and Andy (Shay). They are all exceptional men that have done some amazing things with Uplifting Athletes. I especially enjoyed visiting the children’s hospital and meeting a lot of young people that are facing some adversity right now. It made me realize how lucky I am to be able to play the great game of football. We also had the opportunity to hear from Beth Nguyen, a 2017 NORD Rare Impact Award Honoree. She is a mother, wife, nurse, patient, and advocate for the rare disease community. In 2012, Beth was given the diagnosis of Syringomyelia and she later created a task force (WSCTF) to increase understanding of the disease across all medical disciplines and to improve direct patient care. She also started a patient registry to drive research, has organized support groups, and developed of the first-ever advocacy models of care for both Syringomyelia and Chiari Malformation. Everyone was intrigued by her message and very respectful of her mission. As I reflect on the weekend, I am so thankful for every chance I get to wake up and make an impact on the world.

Uplifting Athletes: What was your favorite part or aspect of the weekend and explain why?

Cooney: The best part of the weekend was having the former athlete panel. Being a student-athlete is a privilege and requires a tremendous amount of time and effort. But eventually football will end, we all need a plan of action when that happens. Having the former athletes speak to us, was an incredible opportunity to hear from players that are now having incredible success in the corporate world. There was no sugar coating the conversation, it was powerful, funny and engaging. Having athletes from various schools, with totally different lives created a connection with everybody in the room. Everybody in the room has incredible competitiveness, and the former athletes are giving us the tools to harness that and use it on and off the field. Uplifting Athletes encourages athletes to make a difference in the community, use the power of sport to tackle rare diseases. But also use the power of sport in all different areas. To paraphrase something that was said that resonated with me was, after you graduate your identity as an athlete diminishes. Utilize being a student-athlete, to create opportunities and relationships that you’ll use your entire life. Another piece that stuck with me is when the panel was asked how much being an athlete translates to the working work. They responded with, look at the job description, teamwork, time management, dedication, ability to listen. Every one of these qualities is developed being an athlete. As the weekend progressed, I was constantly thinking about tasks and ideas I was ready to tackle. It re-energizes my enthusiasm to grow our chapter and make a difference.

Klock: Besides visiting the children’s hospital, my favorite part of the weekend was the former student-athlete Q&A session. We had the opportunity to hear from a player panel of former college student-athletes living in the Atlanta area. We asked a lot of questions about making the transition from college into the professional world. They were all very successful people and I learned a lot from it. The focus of the weekend was to learn more about the fight against rare diseases and develop a goal for our individual chapters, but I also really enjoyed learning about the “Uplifting Leaders” part, which consisted of tools and advice to prepare for life after football.

 

Annual Leadership Development Conference welcomes 36 college football student-athletes to Atlanta


LDC18 GRAPHICFor the ninth consecutive year, we will gather college football student-athletes for three days of education, training and networking during the 2018 Uplifting Athletes Leadership Development Conference.

This year 36 current football players from 18 universities across the country will travel to Atlanta on Friday, January 26 to kick off a busy weekend of engaging work sessions, networking and relationship building.

“We are excited to provide the student-athletes with an opportunity to network with other bright minded leaders in college football,” Uplifting Athletes Director of Chapter Development Brett Brackett said. “Our goal is to grow their personal skill set and help them learn more about how to leverage their position as student-athletes to impact the rare disease community through Uplifting Athletes.”

Among the 18 schools that will be represented in Atlanta, six of those are prospective Uplifting Athletes Chapters. Defending National Champion Alabama, Minnesota, Temple, Davidson, Lehigh and Western Michigan have student-athletes attending for the first time.

Current Chapter leaders from Clemson, NC State, Notre Dame, Penn State, Syracuse, Illinois, Saint Francis, Penn, Northwestern, Maryland, Princeton and Stony Brook will also be in attendance.

The 2018 Leadership Development Conference will kick off with a team meal Friday night prior to a full weekend agenda.

The conference content is developed and driven by the Uplifting Athletes staff, but will also feature a panel of former student-athletes answering questions about the transition to the professional world.

Included in the workshop sessions on Saturday and Sunday are an overview of Uplifting Athletes, Lift For Life and Touchdown Pledge Drive event planning and transferable life skills development.

The highlight of Saturday will be an Uplifting Experience for the student-athletes featuring a visit to the Scottish Rite Children’s Hospital to interact with rare disease patients.

We are very excited to bring this group together to learn from each other, to strategize together and to foster the sense of teamwork that inspires us all.

 

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.