A special night with Penn State coach James Franklin to support the rare disease community


CJF THANKS GRAPHIC 1Thank you to Penn State head football coach James Franklin for taking time out of his extremely busy schedule to visit us in Mechanicsburg, Pa. last month.

A Night With Coach Franklin At Stock’s Manor to benefit Uplifting Athletes provided fans and supporters an opportunity to meet the Penn State head football coach, hear him speak about building a winning team and learn more about the rare disease community Uplifting Athletes serves.

Nearly 250 college football fans showed up for the two-hour event hosted by the Weinstock and Shirley families.

Guests had their picture taken with coach Franklin, enjoyed some exquisite food and soaked in the festive atmosphere before coach Franklin took the stage with an inspirational message.

A special thank you to all our sponsors for making the evening a complete success. All the funds raised support Uplifting Athletes mission to inspire the rare disease community with hope through the power of sport and directly impacts our four pillars of programming: Uplifting Leaders, Rare Disease Research, Rare Disease Awareness and Uplifting Experiences.

To put the evening in perspective, we asked a few of our guests to share their thoughts on the event.

“The event hosted by Uplifting Athletes at Stock’s Manor left little extra to be desired. The venue provided a beautiful intimate setting perfect for an evening of mingling with those who share a passion for Penn State and the rare disease community. The food far exceeded the advertised label of “appetizer”, with numerous hot dishes available along with a wide selection of finger foods. I would be remiss not to mention the variety of drinks available as well. There were plenty of the alcoholic nature, helping to take the edge off a bit as attendees anticipated meeting the coach and hearing him talk about bringing Penn State football back into the national spotlight. Coach James Franklin, surely didn’t disappoint either. His infectious and warm personality embraced those looking to have their picture taken with him, and his fiery keynote was the perfect ending to the night. The opportunity to attend a presentation where coach doesn’t need to use a microphone are likely few and far between these days. This event provided that opportunity and more, all while raising money for a great cause. It’s great anytime the “family” can get together as coach says and this was another great example. Being able to help the rare disease community made it all the more special and truly meaningful. Much appreciation and thanks to Uplifting Athletes for all they represent and do. I look forward to similar potential events. I will most certainly be there!” – Travis Wentz

“I enjoyed Coach Franklin’s speech when he said how important it is to sacrifice to achieve success both on the field and in life.  Very motivating for athletes and those in attendance.” – Joseph Gordon

“An Evening with Coach Franklin event last Thursday evening was amazing.  As a fan, as a Penn Stater and as a host. So many events you can feel the nervousness and anxiety. Not last Thursday. The feeling was electric, friendly, and intimate. Which was even before Coach walked into the room! The feeling was a tailgate with your best friends. I can not decide if watching every single person having their picture taken with Coach or listening to him speak was more exciting. Listening to someone talk about something they have a passion for makes you know how much they love it. Coach Franklin made everyone feel like they could put on a jersey and run out onto the field and catch a winning touchdown. Working with Stephanie and Scott (Shirley) was just as fun. I think we are all proud of the way the evening turned out. It seemed everyone had a great time and we raised money for a wonderful cause.” – K.J. Weinstock

 

 

 

Uplifting Athletes awards UCF linebacker Shaquem Griffin 2018 Rare Disease Champion trophy at Maxwell Football Awards Gala


This slideshow requires JavaScript.

At the 81st annual Maxwell Football Club Gala this past weekend in Atlantic City, we very proudly honored our 10th winner of the Rare Disease Champion Award, former UCF linebacker Shaquem Griffin.

The Uplifting Athletes Rare Disease Champion Award is presented annually 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 is an NFL draft prospect fresh off a meteoric rise following a spectacular performance at the NFL Combine. He was joined at the Tropicana Casino & Resort by his mother, Tangie, twin brother Shaquill, who plays for the Seattle Seahawks, and six other family members to celebrate his achievement.

“It’s such an honor to be here with all these big-time names in football at an awards gala like this,” Griffin said. “Thanks to Uplifting Athletes for recognizing me as their champion. It’s a true blessing to be your champion.”

Griffin was part of the impressive Maxwell awards program that included: former Oklahoma quarterback Baker Mayfield, Super Bowl Champion Philadelphia Eagles coach Doug Pederson and quarterback Carson Wentz, former Alabama defensive back Mikah Fitzpatrick and legendary Florida State coach Bobby Bowden.

Griffin was presented his trophy by current USC long snapper and 2016 Rare Disease Champion winner Jake Olson.

“Coming back to present Shaquem his Rare Disease Champion Award was special to me as a former winner. The voice Uplifting Athletes has in college football is important,” Olson said. “This award recognizes those who have lived or were born into the world of suffering, but changed that over into the world of overcoming.”

Born with amniotic band syndrome, a rare disorder that led to the removal of his left hand when he was 4-years old, Griffin never let his rare disorder stand in the way of pursuing his dreams on and off the football field.

His combination of speed, power and athleticism completely overshadowed the absence of a left hand. In 2016, his first season as a full-time starter, Griffin soared well beyond expectations and earned the American Athletic Conference (AAC) Defensive Player of the Year honor. He backed it up with a stellar 2017 as part of the Knights’ run to a conference championship and undefeated season that included a bowl victory over Auburn.

“I never went into a practice or a game thinking about me having one hand. I never thought about how hard it must be to play that way,” Griffin said. “I just see the ball and go after it and make plays like anybody else. Yes I might look a little different, but I’ve played a game with a broken right hand and made 14 tackles so I can play with no hands if I have to.”

 

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.

Former Orange linebacker Zaire Franklin joins Uplifting Athletes Reps For Rare Diseases team during Syracuse Pro Day March 19


ZAIRE RFRD 18 GRAPHICFormer Syracuse standout Zaire Franklin has chosen to make his Pro Day a platform to inspire the rare disease community with hope through the power of sport.

The linebacker is doing a Reps For Rare Diseases campaign with Uplifting Athletes to support the Rare Disease Community.

Fans and supporters can join Zaire and Uplifting Athletes to help tackle rare diseases by making a pledge today for every bench press repetition Franklin performs at the Syracuse Pro Day on March 19 by visiting his Reps For Rare Diseases site.

Franklin views Uplifting Athletes as an important part of his Syracuse experience, and that is why he chose to launch a Reps for Rare Diseases campaign.

As I take a step toward my NFL dream, I’d like to use this opportunity to give back,” Franklin said. “I have committed my performance at the Syracuse Pro Day to support Uplifting Athletes and its mission to help tackle rare diseases.”

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.

Make your pledge now to join Zaire Franklin in the fight against rare diseases.

Former Owls standout Nick Sharga set to help tackle rare diseases during upcoming Temple Pro Day


SHARGA RFRD 18 GRAPHICFormer Temple football standout Nick Sharga has chosen to make his NFL Pro Day a platform to inspire the rare disease community with hope through the power of sport.

The fullback is doing a Reps For Rare Diseases campaign with Uplifting Athletes to support the Rare Disease Community.

Fans and supporters can join Nick and Uplifting Athletes to help tackle rare diseases by making a pledge today for every bench press repetition Sharga performs at the Temple Pro Day on March 19th by visiting his Reps For Rare Diseases fundraising site.

As I take a step toward my NFL dream, I’d like to use this opportunity to give back,” Sharga said. “I have committed my performance at the Temple Pro Day to support Uplifting Athletes and its mission to help tackle rare diseases.”

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.

Uplifting Athletes is a national nonprofit that inspires the rare disease community with hope through the power of sport.

Founded in 2007, Uplifting Athletes has college football student-athlete led chapters nationwide in FBS and FCS programs including half the schools in the Big Ten and ACC conferences.

Former Hokies offensive lineman Eric Gallo using Virginia Tech Pro Day to help tackle rare diseases


GALLO RFRD 18 GRAPHICFormer Virginia Tech standout Eric Gallo has chosen to make his NFL Pro Day a platform to inspire the rare disease community with hope through the power of sport.

The offensive lineman is doing a Reps For Rare Diseases campaign with Uplifting Athletes to support the Rare Disease Community.

Fans and supporters can join Eric and Uplifting Athletes to help tackle rare diseases by making a pledge today for every bench press repetition Gallo performs at the Virginia Tech Pro Day on March 14 by visiting his Reps For Rare Diseases fundraising page.

“It is an honor to be able to use my platform to help raise awareness and support Uplifting Athletes and the rare disease community,” Gallo said. “I’m proud to be part of their 2018 Reps For Rare Diseases team.”

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.

Uplifting Athletes is a national nonprofit that inspires the rare disease community with hope through the power of sport.

Founded in 2007, Uplifting Athletes has college football student-athlete led chapters nationwide in FBS and FCS programs including half the schools in the Big Ten and ACC conferences.

Four former Wildcats join Uplifting Athletes Reps For Rare Diseases team for Northwestern Pro Day


This slideshow requires JavaScript.

Four former Northwestern Wildcat football players are using the next step toward their NFL dream as an opportunity to give back.

Each is running a Reps For Rare Diseases campaign to support Uplifting Athletes and its mission to inspire the Rare Disease Community with hope through the power of sport.

Defensive lineman Tyler Lancaster, defensive back Moe Almasri, running back Corey Acker and offensive lineman Brad North have joined teammates Justin Jackson and Godwin Igwebuike from the NFL Combine on the Uplfiting Athletes Reps For Rare Diseases campaign team.

Fans and supporters can pledge to any or all four players for each bench press repetition they perform at the Northwestern Pro Day on March 13th. Choose your favorite Reps For Rare Diseases player and support the rare disease community by making your pledge today.

All the former Wildcats view Uplifting Athletes as an important part of their college experience, and that is why they chose to launch Reps for Rare Diseases campaigns in support of the rare disease community.

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