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.

INSIDE THE STORY

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.

THE RARE JOURNEY

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.

WHAT THEY SAID

“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

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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

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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.”

 

Notre Dame Chapter annual bowling event set for June 12


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The Notre Dame Chapter of Uplifting Athletes will hold its annual community bowling event on Sunday, June 12.

This will be the third consecutive year the Notre Dame Chapter is holding this event to support its mission of using college football as a platform to inspire the rare disease community with hope through the power of sport.

Once again the Notre Dame Chapter bowling event will take place at the Strikes & Spares Event Center in Mishawaka, Indiana from 10 a.m. until Noon.

Fans of the Fighting Irish will have the opportunity to bowl with members of the football student-athlete led Notre Dame Chapter for an hour.

Each registrant will hit the lanes for an hour with three other registrants and two members of the Notre Dame Chapter. The cost for registration is $30 and includes personal interaction and photo opportunities with the Fighting Irish players and Notre Dame Chapter members in attendance.

In order to register for the Notre Dame Chapter Bowling Event visit the online registration page at give.upliftingathletes.org/ndbowling2016

Fans are encouraged to come out and support this event and the Notre Dame Chapter as it helps bring the vision of Uplifting Athletes to life; which is to empower people to take action against rare diseases and inspires the medical community to find cures.

The challenges faced by the rare disease community are bigger than any one individual, team or organization can tackle alone. The grassroots effort of the Notre Dame Chapter, along with a nationwide network of teams, is uniquely positioned to educate and engage the local community and shine a spotlight on rare diseases.

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.

Diagnosed with the rare disease osteosarcoma in 2011 as a teenager, Grewe is a huge Irish fan and the Notre Dame football program formed a close relationship with Grewe as he battled his rare disease.

Please consider helping the Notre Dame Chapter of Uplifting Athletes tackle rare diseases.

 

 

Five former Uplifting Athletes Chapter leaders named to 2016 NFF Hampshire Honor Society


SPENCER DRANGOWhen a college football student-athlete chooses to take on a leadership role of an Uplifting Athletes Chapter, it take a special level of drive, compassion and commitment to ensure the mission is carried out.

So it should come as no surprise that five former Uplifting Athletes Chapter leaders were honored as part of the 2016 National Football Foundation (NFF) Hampshire Honor Society.

The National Football Foundation & College Hall of Fame (NFF) announced the members of the 2016 NFF Hampshire Honor Society, which is comprised of college football players from all divisions of play who each maintained a cumulative 3.2 GPA or better throughout their college career.

A total of 868 players from 275 schools qualified for membership as the society celebrates its 10th year, setting a new record for the number of players honored during the history of the program.

Spencer Drango from Baylor, Ben Kline of Penn State, Joe Schmidt out of Notre Dame, Riley Dixon of Syracuse and Fordaham’s Garrick Mayweather Jr. are the former Uplifting Athletes Chapter leaders named to the 2016 NFF Hampshire Honor Society.

Founded in 2007 by former Penn State wide receiver Scott Shirley, Uplifting Athletes is a national nonprofit that inspires the rare disease community with hope through the power of sport. The challenges faced by the rare disease community are bigger than any one individual, team or organization can tackle alone.

The grassroots efforts of the Uplifting Athletes nationwide network of student-athlete led chapters, which includes half the schools in the Big Ten, ACC and at least one chapter in each of the Power Five Conferences, are uniquely positioned to educate and engage the local community and shine a spotlight on rare diseases.

The NFF Hampshire Honor Society capitalizes on the NFF’s National Scholar-Athlete program by greatly expanding the number of scholar-athletes the NFF can recognize each year. The program further strengthens the organization’s leadership role in encouraging academic performance by the student-athletes who play football at the 775 colleges and universities with football programs nationwide.
Ben Kline

Notre Dame Chapter President Joe Schmidt is living his dream


Joe Schmidt is the current President of the Uplifting Athletes Notre Dame Chapter. This story written by ESPN.com Notre Dame and ACC Reporter Matt Fortuna originally appeared on ESPN.com.

SOUTH BEND, Ind. — Joe Schmidt’s right-hand-man says the defense wouldn’t be the same without him. His father says he wouldn’t put a price on his son’s dream. His coach invoked the name of the NFL’s top defensive player when discussing him — at least in each’s recruitment.

“There’s a handful of those guys every year: When I recruited J.J. Watt at Central Michigan, why didn’t he have more offers?” Notre Dame coach Brian Kelly said. “So everywhere that I’ve been, I’ve recruited somebody along the way that has turned out to be a great player and he didn’t have a lot of offers.”

Hyperbole aside, Schmidt’s path from preferred walk-on to starting middle linebacker has been one of the more remarkable stories this season for No. 9 Notre Dame, which puts its 4-0 mark to the test Saturday against No. 14 Stanford. The California kid is one off the team lead in tackles (30) and has been instrumental in the development of the nation’s No. 4 scoring defense, a unit that replaced seven starters from 2013 while adjusting to new coordinator Brian VanGorder and his aggressive attack.

VanGorder deemed the redshirt junior before the season as “unusual” in his ability to communicate as the quarterback of a new defense. So far that has bared true, with Schmidt tracing the knowledge-base back to an adolescent career that saw him play everywhere from the trenches to under center to the secondary.

Schmidt’s father, also Joe, saw those instincts take over when his son was called up to the varsity as a sophomore at powerhouse Mater Dei in Santa Ana, which at the time featured future pros Matt Barkley and Khaled Holmes.

The insecurity of being the new guy begat extended time in the film room, the elder Schmidt said, the same way the insecurity of entering Notre Dame as a walk-on begat over-preparation. Mater Dei coaches at times had to re-enforce to Schmidt that his talent belonged among the big boys he was playing with, for fear of him becoming too cerebral and not trusting his instincts.

When Schmidt’s parents take him to dinner after games now, they hardly recognize the disciplined eater, who had regularly downed burgers, fries and soda as a teenager. When in the stands, Schmidt’s father at times cannot help but grow uneasy watching his son running around barking orders like a drill sergeant before each play.

” ‘Joe, worry about what you’re going to be doing. Make sure you’re ready when the ball’s snapped,’ ” the elder Schmidt joked. “But he seems to figure out a way to read the defense, make the calls and be ready.”

Despite a 98-tackle senior year that ended in the state semifinals, the now-235-pound Schmidt failed to draw heavy interest from college suitors. The Schmidts takes some responsibility for that, given Joe’s narrow-minded approach to his recruitment. The oldest of his three sisters, 31-year-old Catherine, had run track at Notre Dame, and the family would visit during football weekends. Schmidt, roughly 10 at the time, immediately fell in love with the place and never wavered. Backyard football consisted of him pretending he was playing for Notre Dame, often scoring game-winning touchdowns against home-state rival USC.

Under-sized and without much pro-activeness toward the small pool of interested recruiters, Schmidt found his offers limited to Ivy League schools, Cincinnati, Air Force and few others. There remained Notre Dame — which offered him a preferred walk-on spot — and its roughly $50,000-a-year pricetag, making for lengthy conversations between son and parents.

“We had a wall covered in posterboard weighing them all,” Schmidt said of the options.

The Ivy alternatives didn’t look so bad to his parents. (Joe is an investor at a private-equity firm. His wife, Debra, is a pro soccer coach.) Schmidt made it clear that he would accommodate their needs, but he also laid out the dream in front of him.

” ‘My dream is to play at Notre Dame,’ ” the elder Schmidt recalled his son saying. ” ‘Even if I have success at another school, I don’t want to think, ‘Could I have done it at Notre Dame?’ If I go there and it doesn’t work out, at least I gave it my all.’

“My wife and I were in tears. How do you say no to that? You both want what your kids really aspire to achieve, and we knew if he was that hungry he was going to work his tail off.”

Special teams contributions gave way to a scholarship in June 2013. Schmidt informed his parents of the news with a 5:30 a.m. PT wake-up call telling them they had just saved $100,000. A midseason injury to Jarrett Grace last year paved the way for more defensive snaps, with Schmidt living out his dream in his first extended action by making a game-saving hit on USC’s final drive to help clinch the win.

His father joked that he might have needed to give his son eternal psychological counseling had that game ended differently, but Schmidt’s been the one leaving his mark on others. He helped establish Notre Dame’s chapter of Uplifting Athletes, a non-profit that aligns college football teams with rare diseases. When his uncle, Gary, died from lung cancer two years ago at the age of 61, he and his family launched the Schmidt Legacy Foundation, which raises money for medical research, specifically lung cancer and dementia. Schmidt was Notre Dame’s nominee for the AFCA Good Works Team, as its most charitable player.

Schmidt’s unusual skills have carried him through an unusual route, accelerating the growth of a defense down four contributors amid the school’s internal academic probe. He’s been indispensable through the first-third of the season, an unlikely cog behind an Irish team whose playoff résumé will swell if it beats the Cardinal on Saturday.

“That’s my brother, I love him,” said linebacker Jaylon Smith, the Irish’s leading tackler (31). “Both of us in the middle, it’s just all about family and making sure we’re on the same page. … The communication level, the focal point, it wouldn’t be there without him.”