Weekly Update: Signature ACC road victory for NC State and Touchdown Pledge Drive continues

NC STATE NEWSLETTER IMAGEThank you to Clemson, Maryland, Colgate, Stony Brook and Georgia Tech student-athlete chapter leaders and fans of those programs for supporting the middle week of Touchdown Pledge Drive 2017.

There is still one more set of Uplifting Athletes Chapters on deck to help tackle rare diseases during the three-week campaign.

Illinois, Florida State, Penn and Fordham will hold their Touchdown Pledge Drive games this week.

NC State picked up a signature ACC win by going on the road and pulling off an upset of Florida State in Tallahassee.

The Wolfpack took care of the football with zero turnovers and had only six penalties. NC State piled up nearly 400 yards of offense on the Seminoles defense, led by 230 yards and two touchdowns from QB Ryan Finley.

Meet NC State University Chapter President and Wolfpack tight end Cole Cook in our weekly Beyond The Trophy series.

Defending Ivy League co-champion UPenn moved to 2-0 by taking out winless Lehigh on the road in a wild affair that featured 112 total points and more than 1,150 total yards.

Quakers RB Karekin Brooks had a monster game, rushing for 268 yards on 29 yards with three touchdowns. The UPenn defense also forced three key turnovers.

Penn State remained the No. 4 ranked team in the country by escaping a night game at Kinnick Stadium with a road victory over Iowa by scoring on the very last play.

Trace McSorley hit Juwan Johnson with a 7-yard touchdown pass as time expired to move the Nittany Lions to 4-0. RB Saquon Barkley posted a school record 358 all-purpose yards on 43 touches to earn the Uplifting Athletes Rare Performance of the Week.

The other Ivy League defending co-champion, Princeton, is also off to a 2-0 starter after rolling past Lafayette. Tigers QB Chad Kanoff threw for 256 yards and three touchdowns. His 31 completions were spread out to 10 different receivers. The Princeton defense limited Lafayette to only 36 yards rushing.

Stony Brook won its third game in a row after dropping the season opener to nationally ranked USF on the road. The Seawolves picked up a huge conference victory by using a solid defensive effort to hold off Towson.

WR Ray Bolden had a big game with eight catches for 125 yards and a TD to compliment a 242-yard, two-touchdown outing from QB Joe Carbone.

Georgia Tech used its Touchdown Pledge Drive game to roll up more than 400 rushing yards and five touchdowns to overwhelm Pittsburgh. RB KirVonte Benson and QB TaQuon Marshall combined for 308 yards on the ground and accounted for four of the Yellow Jackets five touchdowns.

The Yellow Jackets defense limited the Panthers to less than 250 total yards and fewer than 40 yards on the ground.

Defending National Champion Clemson used 27 fourth-quarter points to pull away from Boston College for the Tigers’ Touchdown Pledge Drive game and improved to 4-0.

Notre Dame moved inside the Top 25 last week and validated that move by using three turnovers and 28 first-half points to erase Michigan State in East Lansing.

The Top-10 ranked Washington Huskies fell behind Colorado on the road 7-0 after one quarter before reeling off 24 of the next 27 points to seize control of their first Pac-12 game of the season.

Coming off a tough upset loss at home, Nebraska trailed Rutgers on the road early in the second half after a pick-six by the Scarlet Knights to grab a 17-14 lead. Rutgers never scored again, as the Huskers scored the final 13 points to get a much-needed victory. The Nebraska defense again played solid, limiting Rutgers to less than 200 total yards and surrendered only one touchdown.


Summer Lift For Life: Ten events all focused on shining a spotlight on rare diseases

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Before we wave goodbye to summer and usher in the college football season, let’s take a look back at a fast and furious six weeks that was the second phase of our 2017 Lift For Life season.

This summer featured a milestone Lift For Life, a road race that turned five years young and continues to grow, a Kids Combine where National Champions hang out, an inaugural Lift For Life at a history-rich institution and one chapter getting back on the rotation.

Ten events took place in July and early August with a singular focus: shining a spotlight on rare diseases and inspiring others with hope.

Our first stop is a milestone for Uplifting Athletes. Our charter chapter at Penn State held its 15th annual Lift For Life. The Nittany Lions moved indoors this year to Holuba Hall and focused on an offense vs. defense max bench press competition to add some spice for the players.

The work done behind the scenes by each chapter leadership team can be a driving force to measurable success. Maryland and Illinois held private Lift For Life events this year, yet it was clear each chapter was raising awareness and shining a spotlight on rare diseases. That speaks highly to the chapter leadership for the Illini and Terrapins.

For the fifth consecutive year the Nebraska Chapter hosted the Football Road Race that featured a 5K and 1-mile run. The event is strongly supported by the Lincoln Track Club, and this year the event saw a record number of online registrants.  More than 700 total runners came out on a Sunday morning to show that in the Cornhusker state, rare pediatric cancers matter.

Patience and perseverance paid off for the Notre Dame Chapter. After years of trying to get a Lift For Life up and running through all the proper channels, the 2017 leadership team finally cleared all the hurdles and the Fighting Irish not only did their Uplifting Experience annual bowling event, but got after it in the weight room on max leg presses to give their Lift For Life some competitive juice.

In true Defending National Champion-style, Clemson added the inaugural Kids Combine to their summer event schedule. This was in addition to the Tigers holding their annual Lift For Life.

Florida State’s players continue to champion the rare disease cause in support of coach Jimbo Fisher’s son Ethan and his battle with a rare blood disorder. This was the fourth year the Seminoles have used Lift For Life to put a cap on their summer workout season.

Syracuse continues to build its strong roots in support of the rare disease community. The Orange and their relationship with the Belfield family continue to be a source of inspiration, and once again rare disease patient Lillian and her family were part of Lift For Life.

For the third year in a row the NC State Chapter used a combination of individual and 7-on-7 drills as the highlights of the Wolfpack Lift For Life. Once again having their event open to the public was the key to spreading the word about rare diseases.

And the final Lift For Life event this summer featured an FCS chapter – Fordham – that last held an Uplifting Athletes event in 2014. The Rams put the pieces back together and made rare diseases a priority again in the Bronx.

On behalf of the rare disease community we serve, thanks to every chapter leader, college football student-athlete, donor, volunteer and university administrator who helped make Lift For Life 2017 possible.

Together … We Are … Stronger!

Uplifting Athletes set to host 24 student-athlete chapter leaders for 2017 Leadership Development Conference

LDC 17 GRAPHICFor our eighth consecutive year, we will gather college football student-athletes that are current or future chapter leaders together for three days of education and training during the Uplifting Athletes Leadership Development Conference.

This year 24 current football players from 13 universities across the country will travel to Philadelphia on Friday, May 19 to kick off a busy weekend of engaging work sessions, networking and relationship building.

Chapter leaders from Clemson, NC State, Notre Dame, Penn State, Georgia Tech, Nebraska, Syracuse, Illinois, Florida State, Maryland, Stony Brook, Penn and Saint Francis will start the 2017 conference with a team meal Friday night prior to a full Saturday agenda.

The weekend agenda is driven by the Uplifting Athletes staff, but will also feature a breakout session focused on the rare disease community hosted by Kristen Angell from the National Organization for Rare Diseases (NORD).

Included in the workshop sessions on Saturday and Sunday are an overview of Uplifting Athletes, a team building exercise, Lift For Life and Touchdown Pledge Drive event planning, transferable life skills development, communication and social media training, and an introduction to rare disease patient engagement through Uplifting Experiences.

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.


2017 Rare Disease Champion Finalist: Dexter Williams, Notre Dame

Each of the finalists for the 2017 Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2017 Rare Disease Champion, you can visit our voting page.

williams-action-2DEXTER WILLIAMS

University: University of Notre Dame

Vitals: 5-11, 210-pound running back

Quick Hits: The native of suburban Orlando, Florida came to Notre Dame as a Top 125 player overall in the 2015 recruiting class. … Because of injuries at the running back position, was forced into a full-time reserve role on the depth chart as a true freshman in 2015. … Scored his first college touchdown against UMass as a true freshman. … Averaged more than 7.1 yards per carry as a high school senior at West Orange HS with 10 touchdowns. … Saw action in all 12 Notre Dame games as a true sophomore in 2016 totaling 200 yards with three touchdowns and averaged a respectable 5.1 yards per carry. … Had a career best 80 yards on the ground October 1, 2016 in a victory over Syracuse.


Normally, when any player receives an offer from Notre Dame and he wants to play for the Fighting Irish, the decision to head to South Bend, Indiana is pretty easy. That wasn’t the case for Dexter Williams.

In order to pursue his dream of obtaining a degree from Notre Dame and playing for the Fighting Irish, Williams had to leave the side of his mom Cheryl in Florida.

After battling this rare disease for nearly a decade, there is a level of familiarity for the Williams family. But for most of those years, Williams and his mom walked through it together. Now, Cheryl and her son are nearly 1,200 miles apart most of the year.

Like any mother would be, despite her personal struggles with a rare autoimmune disorder called myasthenia gravis, Cheryl was thrilled for Dexter’s opportunity at Notre Dame.

Inspiration comes in many shapes and forms. And in this case the extremely tight relationship between Williams and his mother serves mother and son well on so many fronts.

The two still talk almost every day and any chance Williams gets to play in front of his mom is special. Because of her struggles with her rare disease, she can’t travel much.  Even seeing him play  in high school was difficult.

But earlier this season, Cheryl was in good enough health to make a trip to Notre Dame stadium for its game against Duke. Williams not only played in the game, he scored the third touchdown of his young Notre Dame career on a 13-yard run with his mom in the stands.

And after he crossed the goal line, Williams pointed right at his mom who was crying in her seat. Those types of moments might appear fleeting to some, but for the Williams family they are the ties that bind.


Cheryl was diagnosed with myasthenia gravis following a series of strokes in 2006.  The Williams family has endured the fight with this rare disease for more than a decade.

This particular neuromuscular disease is long term and leads to varying degrees of disconnect between the nerves and voluntary muscles. It results in weakness of the legs, arms, causes double vision, drooping of the eyelids and makes it difficult to chew, speak, swallow and breathe.

Cheryl Williams undergoes regular chemotherapy and plasmapheresis treatments that require hospitalization every three or four months.

While some symptoms and complications from this rare disease are treatable, a myasthenia crisis is a life threatening condition that affects breathing.

That’s what happened to Cheryl Williams in 2010.

Williams came home from school and as he went down to give his mother a kiss, he found she was unconscious laying on the couch. Cheryl was rushed to the hospital and spent nearly three months on life support.

Less than 24 hours before the family was going to turn off the machines, Cheryl woke up. And right there by her side was Williams, tears streaming down his face telling his mother “not yet.”

The distance between Orlando and South Bend has been difficult for both mother and son equally. But through this decade-plus rare disease battle they each have provided the other with hope and determination to keep fighting the battle.


“I watch every game, some during treatments with the doctors and nurses. They all know him. There is nothing greater than seeing him and the joy in his eyes when he’s given the chance to play. I literally cry like a baby when he’s playing, but simply out of joy and gratitude.” – Cheryl Williams


Taking a look back at 2016 for Uplifting Athletes

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In a year of change on many fronts for Uplifting Athletes, taking time to reflect is time well spent.

Our purpose as a national nonprofit remains unaffected. We serve the 30 million Americans that comprise the rare disease community. But our scope and mission underwent a natural evolution to kick off the year.

We expanded our scope of support to the larger rare disease community as a whole and settled on five categories of rare disease groups, rare cancers, rare blood disorders, rare genetic disorders, rare autoimmune disorders and rare muscular disorders.

Our mission has remained the same since 2007, but we overhauled the words to more adequately reflect where we want to go in the future. Uplifting Athletes is a national nonprofit organization that inspires the rare disease community with hope through the power of sport.

In February we crowned our eighth Uplifting Athletes Rare Disease Champion. And we celebrated USC long snapper Jake Olson and his amazing rare disease story at the annual Maxwell Football Club Awards Gala in March.

Our annual Gridiron Gala was also in March, and for the first time we put the focus of our annual fundraising event squarely on rare disease patients and their families. It was a celebration of battling, and in some cases overcoming, the challenges of a rare disease journey.

In May we welcomed a record 30-plus leaders in college football to Northwestern University for our annual Chapter Leadership Conference. The weekend painted a promising picture for the future of our nationwide network of student-athlete led chapters.

Over the course of the late spring and into the summer, 19 chapters ran a Lift For Life event. This is the signature fundraising and rare disease awareness event, but trust us when we say no two events are the same.

Penn used its annual Iron Quaker lifting competition to hold its Lift For Life, Notre Dame holds a bowling event to engage the community, at Arizona it’s a kids clinic and Nebraska holds an annual 5K/Fun Run as its signature event.

Clemson, Georgia Tech, Washington and Northern Arizona each held their inaugural Lift For Life events in 2016. And the charter chapter of Uplifting Athletes, Penn State, held its 14th annual Lift For Life.

The funds that are raised from these annual Lift For Life events supports rare disease research and patient focused programs. And this fall, Uplifting Athletes allotted research funds to support translational research being done at UPMC in Pittsburgh, Fox Chase in Philadelphia and Penn.

August was a month of more transition for the organization. Former Chapter Manager Becky Mayes left after nearly four years with Uplifting Athletes and Director of Marketing Mark Mihalik took a similar position with PledgeIt.

Those departures provided Uplifting Athletes the opportunity to hire Rob Long as the Director of Strategic Development and Chapter Liaison. Long is the inspiration behind Syracuse forming a chapter, a former rare disease patient who overcame his rare brain cancer and played college football.

In addition, John Trzeciak was looking for passion and purpose in his journey and as a long-time resident of State College and a Penn State alumnus and fan, he knew about Uplifting Athletes. Trzeciak is a full-time volunteer and mentor with a wealth of knowledge and skills that will help Uplifting Athletes maximize its resources in the future.

At the peak of their football season, 11 members of the Uplifting Athletes Chapter network donated their time and hard work to run Touchdown Pledge Drives.

In its third year of existence, Arizona, Clemson, Colgate, Florida State, Maryland, Penn State, Penn, Princeton, St. Francis, Stony Brook and Syracuse hosted Touchdown Pledge Drive games.

Penn, who shared the Ivy League title with Princeton, ran a campaign that included all of its Ivy games and included the offense, defense and kicking game. Colgate and Princeton each ran offense vs. defense drives. The remaining eight chapters ran a pledge drive based solely on touchdowns.

We are grateful for all the blessings of this past year that allowed us to serve the rare disease community. We are excited for 2017.

Together … We Are … Stronger!


Notre Dame Chapter bowls over rare diseases

ND BOWLING EVENT 16 IMAGENearly 20 Fighting Irish football student-athletes came out to interact with fans and hits the lanes last Sunday as part of the annual Notre Dame Chapter Bowling Event.

The event was held at the Strikes & Spares Event Center in Mishawaka, Indiana and is a signature awareness and fundraising campaign in support of the rare disease community through Uplifting Athletes.

Several of the Notre Dame players bowled with 11-year-old rare disease patient Jerzee Sikora. They guided her wheelchair down the lane and helped push the ball down a ramp towards the pins, celebrating each shot with her.

“I think, more than anything, it just puts life into perspective for us,” said junior safety Drue Tranquill. “In the day-to-day, we’re battling for a position on the field, but these guys are battling for their lives.

“However down you might be during the week on your performance or whatever it might be, you come to an event like this and you see kids that are smiling in the face of such deep adversity. It just can’t help but encourage you as well.”

This event by the Notre Dame Chapter supports its mission of using college football as a platform to inspire the rare disease community with hope through the power of sport.

The Notre Dame Chapter started tackling rare diseases in 2012 when it joined Uplifting Athletes. The student-athlete led Notre Dame Chapter serves the rare disease community in honor of rare disease patient Sam Grewe.

Notre Dame Bowling Event Story (NDInsider.com)

Notre Dame Bowling Event Video (WNDU TV)

Notre Dame Bowling Event Photo Gallery




Annual Uplifting Athletes Leadership Retreat sees a record 31 student-athletes attend

UA-Retreat-2016Each spring Uplifting Athletes brings together the student-athlete leaders from our Chapter network across the country for a weekend of training and camaraderie guided by the Uplifting Athletes staff.

This year the eighth annual Leadership Retreat took place in late May at Northwestern University in suburban Chicago and featured a record 31 student-athletes from 17 Uplifting Athletes Chapters.

Student-athletes representing Arizona, Clemson, Colgate, Georgia Tech, Illinois, Northern Arizona, Maryland, Northwestern, Notre Dame, Penn, Princeton, Penn State, Purdue, St. Francis, Stony Brook, Syracuse, and Washington.

“It was a great retreat, and we all learned a lot,” said Princeton Chapter leader Zachary Kuehm, a junior offensive lineman from New Jersey. “Being at the retreat really opened my eyes even more to the great cause that we all are fighting for.

“And it is truly unique to see so many dedicated athletes band together to fight rare diseases.”

The weekend kicked off with the student-athletes traveling in from all over the country Friday afternoon followed by a getting acquainted dinner with the Uplifting Athletes staff and members of the NCAA Compliance team.

Put through their paces by the four members of the Uplifting Athletes staff, Saturday was an intense day of learning and training on the finer points of being a chapter leader.

The Saturday sessions included an Uplifting Athletes overview from Executive Director and Founder Scott Shirley, chapter event planning with Becky Mayes, communications and how to tell your story with Andy Shay and chapter marketing and social media with Mark Mihalik.

Also included in the Saturday programming was an athletics department overview by Brian Baptiste, a Deputy Director of Athletics at Northwestern. And Uplifting Athletes Letterman Zak Pedersen, who founded the Illinois Chapter, stopped by to share his experience and talked about life after college football.

“The leadership retreat was really an awesome experience,” said Penn Chapter President Sam Tullman. “Not only were there a number of presentations with truly valuable takeaways, but more importantly, there was an air of creativity, collaboration and excitement.

“The connections made to other upstanding individuals are something I cherish, and something I see developing into fruitful relationships.”

Before the student-athletes hit the road Sunday afternoon, Mayes went over the nuts and bolts of running a Touchdown Pledge Drive, an open discussion session on getting teammates involved and wrapped up the weekend with a work session on the path forward and the next steps.

In prior years the annual Leadership Retreat was pretty much limited to the east coast in terms of geography. Last year, Uplifting Athletes held two retreats – in Harrisburg and Chicago.

This was the first time it was a held exclusively in Chicago and getting more than 30 student-athletes leaders all together provided a vehicle for learning and sharing that will ultimately greatly benefit the rare disease community.

“The Leadership Retreat was awesome. Getting to know college football players from all around the country was very special,” said Clemson Chapter President and punter Andy Teasdall. “We are in a unique position as leaders to share our Uplifting Athletes college football story and life experiences about serving and helping those with rare diseases.”