Penn Chapter Lift For Life set for February 23rd as part of annual Iron Quaker competition


The Penn Chapter of Uplifting Athletes will hold its Lift For Life to support the Rare Disease Community during the 13th annual Iron Quaker competition on February 23rd.

The Iron Quaker, started in 2007, serves as the final workout for the Penn football team during winter conditioning.

Lift For Life is the signature fundraising event for the Penn Chapter of Uplifting Athletes. Penn is a part of Uplifting Athletes’ nationwide network of chapters led by college football student-athletes.

Each chapter embraces the mission of Uplifting Athletes by using college football as a platform to inspire the Rare Disease Community with hope through the power of sport.

“Being able to pair the Iron Quaker with the Lift for Life is extremely important for our football team,” Penn Chapter leaders Hunter Hayes and Mike Rolfe said. “It gives us the opportunity to use our platform as Division 1 student-athletes to help those who are affected by rare diseases”

The 2019 Penn Chapter Lift For Life will be a competition featuring the maximum weight one repetition bench press for the seven student-athlete led fundraising teams. The event is closed to the public.

Fans and supporters can make a pledge towards any of the seven teams for the total pounds a particular team averages on the maximum weight one repetition bench press during the event. So find your favorite 2019 Penn Quakers Lift For Life team and support them by visiting the Penn Chapter Lift For Life page. You can also make a flat donation to any team.

The proceeds from the Penn Chapter 2019 Lift For Life support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

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

Moved by former Quakers wide receiver Kaleb Germinaro, who lost his playing career to a rare disease, Dr. David Fajgenbaum, a Castleman’s Disease Researcher who has the disease himself, and honorary team captain and brain cancer survivor Vhito Decapria, the Penn Chapter started tackling rare diseases when it joined Uplifting Athletes in 2015.

Please support the Penn Chapter and help the Quakers reach their impressive $7,000 team Lift For Life goal.

Sponsors power Uplifting Athletes’ 2019 Young Investigator Draft


Uplifting Athletes is excited to host the 2nd Annual Young Investigator Draft on Saturday, March 9th at Lincoln Financial Field, home of the NFL’s Philadelphia Eagles.

The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

It takes a strong team to make the Young Investigator Draft a success. We are grateful to all of the major sponsors on our team this year.

“The support that we have received for this event has worked to amplify and instill more purpose in what we do on a day-to-day basis,” Uplifting Athletes Executive Director Rob Long said. “We have great passion to do all we can to have a positive and lasting effect on the Rare Disease Community. Without this event and its sponsors our impact wouldn’t be the same.”

For the second year in a row, global biotechnology leader CSL Behring is the title sponsor of the Young Investigator Draft. CSL Behring is the fifth largest biotechnology company in the world and their commitment as the signature sponsor has been a game changer.

This is the second year to have Sanofi-Genzyme as a teammate. In 2019, Sanofi-Genzyme is sponsoring the Rare Genetics Disorder grant. At Sanofi-Genzyme, they continue to focus on being transformative in rare diseases: developing therapies, supporting research and offering innovative solutions that have the potential to offer meaningful change to those impacted by rare diseases.

Horizon Pharma was one of the first sponsors of the Young Investigator Draft and we are honored to have them back in year No. 2. Horizon is the Rare Blood Disorders grant sponsor for 2019. Horizon Pharma defines its success by a different set of numbers: the number of lives touched, the number of lives changed, the number of lives saved.

For the second year in a row Retrophin is part of the Young Investigator Draft team. This year, Retrophin is the the Rare Blood Disorders grant sponsor. At Retrophin, their mission is to identify, develop and deliver life-changing therapies to people living with rare diseases.

PRA Health Sciences has been a strong two-year supporter of Uplifting Athletes and the Young Investigator Draft. For 2019, PRA Health Sciences is on board as an All-American sponsor. PRA Health Sciences is dedicated to the future of clinical development and every life it saves.

Uplifting Athletes is pleased to have first-time sponsor Bristol-Myers Squibb as an All-Conference sponsor of the Young Investigator Draft. Bristol-Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases.

Spark Therapeutics was the very first sponsor of the Young Investigator Draft and we will always be grateful for their commitment to rare disease research through our event. In 2019, Spark returns as a Varsity sponsor. At Spark Therapeutics their mission is to challenge the inevitability of genetic disease by discovering, developing and delivering treatments in ways unimaginable – until now.

This is the second year for Strongbridge Biopharma as a Young Investigator Draft teammate. In 2019, Strongbridge Biopharma is a Varsity sponsor. They are called Strongbridge for a reason. They are building a strong clinical and financial foundation to connect patients with new treatments for rare diseases.

We Work For Health (WWFH) is in its second year as a sponsor and in 2019 will be a Varsity sponsor. We Work For Health is supported by PhRMA and seeks to educate elected leaders, the news media and the communities they serve about the important contributions companies and their employees make to the health and economic security of individuals, local communities, states and the nation.

Ultragenyx is a new member of the Young Investigator Draft sponsor team this year and will be a Varsity sponsor in 2019. Ultragenyx is a biopharmaceutical company committed to bringing to patients novel products for the treatment of rare and ultra-rare diseases, with a focus on serious, debilitating genetic diseases.

And finally, Uplifting Athletes is honored to have 3 CBS Philly on board for 2019 as our Young Investigator Draft Media sponsor.

Similar to the NFL Draft where teams select the top young prospects they feel can make the most impact on their future, at the Young Investigator Draft, Uplifting Athletes will reveal our 2019 draft class in five different rare disease categories.

The five Young Investigator categories are: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

“After the great success of last year’s inaugural Young Investigator Draft, we are proud to once again use our platform to promote and support the brilliant minds that are conducting rare disease research.” Long said. “We are uniquely positioned to host an event where we can foster collaboration and awareness by bringing together patients, caregivers, researchers, clinicians, industry and athletes in one room.”

Young Investigator Draft grants are intended to inspire collaborative and translational research that will benefit the entire Rare Disease Community. The Young Investigator Draft stage will provide a platform for these scientists to educate and inspire the audience by sharing their research along with its impact on the Rare Disease Community.

Tickets to the 2019 Young Investigator Draft are available through the registration page. The event will include stadium tours of Lincoln Financial Field, heavy hors d’oeuvres and beer and wine prior to the program for the evening.

The challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. At Uplifting Athletes we take pride in providing opportunity for college football student-athletes and NFL players to use the platform they are afforded to shine a spotlight on rare diseases and support the cause.

Uplifting Athletes transitions to new leadership team led by Executive Director Rob Long


Brett Brackett moves into General Manager role to complete leadership team

New Uplifting Athletes Executive Director Rob Long

Uplifting Athletes is excited to officially announce the promotions of Rob Long to Executive Director and Brett Brackett to General Manager.

The duo will comprise a new executive team formed in the final quarter of 2018. Uplifting Athletes former Executive Director Scott Shirley, who founded the organization in 2007, will continue to serve the Rare Disease Community through his position as a board member.

“Uplifting Athletes has been a wonderful journey for me and my family, and we’re excited about this new chapter,” Shirley said. “I was fortunate enough to have my team, the Penn State community, and ultimately, the nation, rally around a cause that I will always be deeply passionate about.”

The transition of leadership began when Long joined Uplifting Athletes in September 2016. Since that time, he has held multiple positions including Chapter Manager and Director of Rare Disease Engagement. Since he moved into his Director role, Long has significantly expanded the footprint of the organization within the Rare Disease Community by developing strong partnerships that have spawned growth on several fronts.

The former Syracuse All-American punter, who served as the inspiration for the Orange football program teaming up with Uplifting Athletes during his battle with a rare form of brain cancer, will continue to build what he started as the Director of Rare Disease Engagement while assuming the Executive Director title.

“Having the opportunity to step into this role and use my voice and experiences to help support the Rare Disease Community is a dream come true,” Long said. “Scott has created a strong foundation we will continue to develop upon. We have assembled a dynamic team at Uplifting Athletes and I believe great things are in store as we move forward as an organization.”

In addition to Long taking on an expanded role, Brackett has been elevated into the General Manager role for of the organization while also seeing to his duties as Director of Sports Impact. Brackett came to Uplifting Athletes in April 2017 after retiring from the NFL and has always been a strong advocate for the Rare Disease Community. He served as the Penn State Chapter President while playing wide receiver for the Nittany Lions and always had a passion for supporting the cause professionally.

“I’ve had the pleasure of walking alongside these two great men for many years,” Shirley added. “As an organization, we wanted to secure the future by recognizing their efforts and putting them in a position to amplify their impact on the communities we serve.”

A nonprofit organization founded in 2007, Uplifting Athletes inspires the rare disease community with hope through the power of sport. A rare disease is one that affects fewer than 200,000 Americans and typically lacks financial incentive to make and market new treatments. With a network of university chapters run by current college football student-athletes, Uplifting Athletes has established 28 chapters with Division I football programs across the country.

Since it was founded, Uplifting Athletes has raised more than $4.5 million in support of the Rare Disease Community, and a third of that, $1.5 million, has been given to fund rare disease research. The Young Investigator Draft has become our priority to funding rare disease research in the future.

The mission of Uplifting Athletes is accomplished through four charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders. For more information about Uplifting Athletes, visit www.upliftingathletes.org

Uplifting Athletes team (left to right): Rob Long, Andy Shay, Scott Shirley, John Trzeciak and Brett Brackett.

Uplifting Athletes to welcome 40-plus college football student-athletes for 10th Leadership Development Conference in Atlanta


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The bedrock of the Uplifting Leaders program at Uplifting Athletes is the college football student-athletes that guide our nationwide network of chapters.

These student-athletes already have the drive and passion to help others and that is why they chose to step up and become chapter leaders to help us serve the Rare Disease Community.

In order to help them become even stronger leaders and advocates, Uplifting Athletes will gather these college football student-athletes together in late January for three days of education, training and networking at the 2019 Leadership Development Conference in Atlanta.

This will be the 10th consecutive year Uplifting Athletes has put together a weekend of intense leadership development and relationship building for current and prospective chapter leaders.

“We are thrilled to host a fantastic group of student-athletes for a three-day conference focused on enhancing life skills, transferable skills recognition, and leadership development through Uplifting Athletes programming,” Uplifting Athletes Director of Sports Impact Brett Brackett said. “Our goal is to provide the student-athletes with the skills necessary to returned to campus empowered to make a positive impact on the Rare Disease Community.

This year 40 current football players from 20 universities across the country will travel to Atlanta on Friday, January 25 to kick off a busy weekend of engaging work sessions, networking and relationship building.

Among the 20 schools that will be represented in Atlanta, four of those are prospective Uplifting Athletes Chapters. Kent State and New Mexico have student-athletes attending for the first time.

Current Chapter leaders from Clemson, Colgate, Davidson, Florida State, Lehigh, NC State, Notre Dame, Penn State, Syracuse, Illinois, Saint Francis, Penn, Northwestern, Maryland, Princeton, Stony Brook, Fordham and Western Michigan will also be in attendance.

The 2019 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 to interact with local Atlanta area 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.

Global biotechnology leader CSL Behring returns as title sponsor for 2019 Young Investigator Draft


yid19 mailchimp graphicUplifting Athletes is pleased to announce global biotechnology leader CSL Behring will return as the title sponsor in 2019 for the second annual Young Investigator Draft on March 9th at Lincoln Financial Field in Philadelphia.

The Young Investigator Draft, tying the theme of the NFL Draft and Rare Disease Research together, is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

CSL Behring is the fifth largest biotechnology company in the world. Their scientists use the latest technologies to develop and deliver innovative therapies that are used to treat rare and serious conditions, including immunodeficiency and autoimmune diseases, hereditary and acquired bleeding disorders, chronic inflammatory demyelinating polyneuropathy, hereditary angioedema and Alpha-1 antitrypsin deficiency.’

“After the phenomenal success of last year’s inaugural Young Investigator Draft, we are proud to once again have CSL Behring’s strong support,“ Uplifting Athletes Executive Director Rob Long said. “CSL Behring’s focus on rare diseases is a perfect fit for this special opportunity to bring the Rare Disease Community together to celebrate the research being conducted by these brilliant young minds.”

Watch 2018 Young Investigator Draft Video!

At the event, individual grants will be given to five Young Investigators who pursue rare disease research in these different areas: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

“Uplifting Athletes has added to college football’s rich history of unique traditions by applying the passion of sport to the rare disease community and creating the Young Investigator Draft,” said Jens Oltrogge, Head of Global Commercial Development, Hematology for CSL Behring. “By returning as the presenting sponsor for this unique and innovative event, we are continuing to deliver on our promise to patients and science by supporting the vitally-important work of these emerging researchers.”

The Young Investigator Draft grants are intended to inspire collaborative and translational research that will benefit the entire Rare Disease Community. The Young Investigator Draft stage will provide a platform for these young scientists to educate and inspire the audience by sharing their research along with its impact on the Rare Disease Community.

Check out 2018 Young Investigator Draft Photo Gallery!

Tickets are available through the Young Investigator Draft registration page.  The event will include heavy hors d’oeuvres and beer and wine prior to the program for the evening.

The challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. At Uplifting Athletes we take pride in providing opportunity for college football student-athletes and NFL players to use the platform they are afforded to shine a spotlight on rare diseases and support the cause.

Founded in 2007, Uplifting Athletes has college football student-athlete led chapters nationwide in FBS and FCS programs from seven conferences across the country.

Since its inception, Uplifting Athletes has raised more than $4.5 million in support of the Rare Disease Community with a third of that, $1.5 million, given to fund rare disease research.

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Western Michigan Chapter leader and RB Jamauri Bogan a ‘transformational” student-athlete


BOGAN 1This story was written by Patrick Nothaft of MLive.com. It is being re-posted with permission.

KALAMAZOO, MI – Rarely at a loss for words, Western Michigan’s loquacious football coach, Tim Lester, struggled to find the right one to describe the impact senior running back Jamauri Bogan has made on the program.

Hard to blame him, though, as it’s not easy to wrap up the accomplishments of a fifth-year player who served as a leader under a previous coaching staff and helped ensure player buy-in under a new regime.

“I don’t know how you put it into words, to be honest with you,” Lester said of Bogan’s impact on the program. “To pick a word that means that much — ‘transformational’ — as far as going from our old culture, which was great and he thrived in, to building our new culture and helping people bridge that gap with the new guys and helping the new guys, with seven freshmen starting, to play like sophomores and juniors because he can put his arm around them.

“That’s a broad enough word to cover all the stuff he’s done.”

On Monday, Bogan added to his Bronco legacy by receiving the Famous Idaho Potato Bowl Humanitarian Award, which recognizes a player from both WMU and BYU for their exemplary work in their respective communities.

BYU outside linebacker Adam Pulsipher was his team’s award recipient.

“As a student-athlete, I think it’s really important to use your platform to give back to someone else,” Bogan said in a video from WMUBroncos.com. “We have a lot of people who pay attention to us, so why not use that to elevate somebody else’s life?”

Bogan’s work in the community includes meeting with students at Tree of Life Elementary School, mentoring student-athletes and Kalamazoo Loy Norrix, and most recently working with the 12 Baskets organization to collect donations for Thanksgiving food baskets.

The New Jersey native has also represented WMU on the Mid-American Conference’s Student Athlete Advisory Committee, served in the university’s Fellowship for Christian Athlete’s organization and is the current vice president of WMU’s chapter of Uplifting Athletes, through which Bogan helped organize a Touchdown Pledge Drive in October, which raised money for rare disease awareness and research.

When the Broncos went to the Bahamas Bowl in 2015, Bogan helped organize a clothing drive for the islands, which were hit by a tropical storm after WMU’s game.

In each of the past two years, Bogan has been WMU’s nominee for the Wuerffel Trophy, which is known as college football’s premier award for community service.

“This opportunity has been a true blessing,” Bogan said. “In five years, I’ll have two degrees. I’ve had the opportunity to touch so many different lives. I’ve learned from ‘me’ to ‘we.’ I’ve been able to just be around people who actually care about serving others, and that forever changed my life because as an 18-year-old young man, I was very selfish, but as I’ve gotten older and as I sit here at 22 years old, I can say that truly it’s not about me, and I enjoy giving back, and I enjoy caring about my teammates, I enjoy spending time with my teammates.”

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There are other goodwill endeavors to which Bogan has volunteered his time throughout his stay in Kalamazoo, but they haven’t stopped him from excelling on the field or in the classroom.

The 5-foot-7 running back ranks second in WMU history with 42 career rushing touchdowns and is sixth all-time with 3,265 rushing yards. This year, he leads the MAC with 15 rushing touchdowns and was named at third team all-conference selection.

With a 3.25 GPA in his master’s of business administration coursework, Bogan is one of a program-record 20 WMU players to earn Academic All-MAC honors in 2018.

After attaining his graduate degree, Bogan plans to continue his work in real estate and already has a company up and running, Nekton Investments, which he started with senior offensive lineman Curtis Doyle.

“In the future, I expect to continue to stay on the same path of serving and maybe in a different capacity since I’ve started a real estate company,” Bogan said. “Right now, we’re dealing with distressed properties and people in distressed situations, so I’m giving back and helping somebody in a situation that’s not the best case for them, but granting them opportunity to say, ‘Hey look, you can move on from the situation and be better after we assist you in getting what you need.'”

Juggling his volunteer work, a successful senior season and a budding real estate career, Bogan hasn’t shown signs of being overwhelmed or overtaxed to Lester, he’s still the same well-mannered young man he met when he was hired in Jan. 2017.

“He’s fun to be around, smiling all the time,” Lester said. “I told him I’m calling him for money someday because he’s going to make a ton of money, and I’ll be on the horn for some. He’s going to be a boss quickly because he’s great at leading people. He’s fair, smart and there’s really nothing he can’t handle.

“I think back to so many stories in the year, where we’re down in games, and we need to score right now, and that’s not his forte of breaking off a 50-yard run, but he’s dialed in going nuts.

“He just understands it and is like another coach out there, another mentor and leader for everybody. I don’t have much time left with him, so I go to him and just talk to him to try to enjoy our last days together.”

With WMU’s bowl game just three days away, Bogan’s time as a member of the Bronco football team is coming to an end, but he’s made sure to take an extra second to live in the moment.

“When it’s your last year, you kind of soak everything in,” he said. “The first camp practice, I just stared and just kind of watched everyone run over and get into stretch lines. You start to take everything in and appreciate every moment.

“Practice is no longer like, ‘Aw man, I’m going to practice; it’s ‘I get to go to practice.’

“You’re more excited about every single moment because you know that on December 21st at 9 o’clock at night, it’s over.

“What I want to do is say that I gave it my all, I left it all out there, and I cared about everybody who was part of the journey.”

 

 

A successful 2018 Year In Review


HappyHolidays-UAMay your days be filled with Peace, Hope and Joy this Holiday Season!

On behalf of the 30 million Americans that comprise the Rare Disease Community, our staff and team of college football student-athletes thank you for your loyalty and support in 2018!  It has been a memorable year and we thank you for helping us achieve our mission.

Most recently, our team was able to be a part of an Uplifting Experience in Seattle. Former University of Illinois and current Seattle Seahawks wide receiver, Malik Turner, hosted a rare disease patient family for the day at the Seahawks facility. Turner continued to build on that relationship during the NFL My Cause My Cleats campaign by securing tickets for ADNP patient Tony Sermone and his family for the game. One of his cleats had the initials “T” and “S” on the back in Tony’s honor. After the game Malik was able to present the signed cleat he wore in the game to Tony.

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Without your support this type of Uplifting Experience would not be possible. Would you consider making a year-end donation to Uplifting Athletes?

2018 also featured plenty of new and exciting milestones for Uplifting Athletes including:

-New Uplifting Athletes chapters established at Western Michigan, Davidson and Lehigh.

-38 NFL prospects participated in our Reps For Rare Diseases campaign during their NFL Combine and individual pro day workouts.

-Held our inaugural Young Investigator Draft in August at Lincoln Financial Field in Philadelphia and scheduled our 2019 event for March 9th back at the home of the Philadelphia Eagles. The Young Investigator Draft is the result of our ongoing commitment to rare disease research. In 2018 we distributed six $10,000 grants to six individual researchers.

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-During the 2018 season, the first ever Rare Disease Awareness Games were held involving Uplifting Athletes Chapter match-ups between Syracuse vs. Western Michigan and Penn vs. Princeton. The chapters wore Uplifting Athletes helmets stickers, #WeTackleRare wristbands and recognized local rare disease patient families during a game break.

-We crowned Coach Joshua Eargle from Austin Peay State University as the 11th winner of the Rare Disease Champion Award – given to a leader in college football who has realized his or her potential to make a positive and lasting impact on the Rare Disease Community. We also enjoyed seeing our 10th winner of the award, Shaquem Griffin from UCF, selected in the fifth round of the 2018 NFL Draft by the Seattle Seahawks.

These are just a few of the 2018 highlights. We have bigger and bolder plans for 2019. As always, though, we need your help.

Please consider giving a gift to support the Rare Disease Community we serve. We can’t do any of this without you!

#WeTackleRare

Scott, Rob, Brett, John, Karen and Andy