Global Biotechnology leader CSL Behring becomes title sponsor for inaugural Uplifting Athletes Young Investigator Draft


YID 18 TITLE SPONSOR GRAPHICUplifting Athletes is pleased to announce CSL Behring as the title sponsor for the 2018 Young Investigator Draft on August 18 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 a global biotechnology leader focused on serving patients’ needs. 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, as well as transplantation and critical care.

“We are so fortunate to have the support of a company like CSL Behring for our inaugural event. Having such a big player in the rare disease space as our title sponsor is a tremendous honor,” Uplifting Athletes Director, Rare Disease Engagement Rob Long said. “The Young Investigator’s Draft will provide funding for inspirational, intelligent, and driven researchers in the rare disease space. The support of CSL Behring as our title sponsor shows their commitment to this as well.”

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

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.

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 including nearly half the schools in the Big Ten and ACC conferences.

Guest speaker Devon Still brings strong message to seventh annual Gridiron Gala


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Uplifting Athletes held its seventh annual Gridiron Gala last weekend at the Keystone Building in Harrisburg, Pa. It was a fantastic evening focused on positively impacting the Rare Disease Community.

The highlight of the evening was guest speaker, former Penn State All-American Devon Still delivering a powerful message about the lessons he learned from his daughter Leah’s battle with a rare childhood cancer.

Still, who played in the NFL before recently retiring, challenged the audience to learn from his shortcomings and make an impact to help others in any way possible going forward.

“What are you willing to go through so others won’t hurt anymore? There are people out there depending on you,” Still said. “I had weak moments, but didn’t let them turn into a mindset.”

Thanks to everyone who attended and supported Uplifting Athletes. You inspire us to find better ways to use our platform to inspire the Rare Disease Community with hope through the power of sport.

A special thank you to a couple of former Penn State Nittany Lions in attendance, Andy Ryland and Scott Davis. The duo was part of the inaugural PSU Lift For Life in 2002 and helped launch a movement that allowed Uplifting Athletes to formally become a national non-profit in 2007.

Ryland and Davis were teammates of Scott Shirley, the founder and executive director of Uplifting Athletes, and more than a decade later, still have a connection to the rare disease cause.

It was a great night of celebration and fun focused on providing hope and inspiration to the Rare Disease Community.

 

 

Penn State Chapter 16th annual Lift For Life set for June 30 at 11 a.m. inside Holuba Hall


PSU L4L 18 GRAPHIC 2The Penn State Football Chapter of Uplifting Athletes, led by co-Presidents Ryan Bates and Steven Gonzalez, will hold its 16th annual Lift For Life to support the Rare Disease Community on Saturday, June 30.

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

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

The 2018 Penn State Chapter Lift For Life has a new date this year, June 30. But the location for the second year in a row will be inside Holuba Hall. The event will start at 11 a.m. and doors will open to the public at 10:30 a.m.

Come out and enjoy watching the 2018 Nittany Lions support Uplifting Athletes to help tackle rare diseases. After the event is over the players will be available for autographs.

“Having the chance to be involved with Lift for Life and Uplifting Athletes is a special part for us as players at Penn State. It’s a tradition the program has been a part of for quite sometime now,” said Bates, a starting offensive tackle for the Nittany Lions. “Being collegiate athletes we have a big platform, and each summer we have the ability to use that platform to spread awareness and raise money for rare diseases. It’s the least we can do.”

Fans and supporters can make a pledge for every bench press repetition members of the Nittany Lions knock out during Lift For Life. So find your favorite 2018 Penn State player and support his position group by visiting the Penn State Lift For Life page.

The proceeds from our 2018 Lift For Life support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

“Lift for Life and Uplifting Athletes is a very important part of the Penn State football experience,” said Gonzalez, a starting guard for the Nittany Lions. “Our program is proud to be inspiring the Rare Disease Community with hope through the power of sport and giving back to help others.”

Today, the challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. The Penn State 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.

The Penn State Chapter is the charter Uplifting Athletes Chapter and served as the catalyst for what has become a nationwide movement. Please support the Penn State Chapter and help the Nittany Lions reach their impressive $100,000 team Lift For Life goal.

“I am excited to have a different perspective on this years Lift For Life as the tradition grows stronger through this group of Nittany Lions,” said former Penn State Chapter President and current Uplifting Athletes Director of Chapter Development Brett Brackett. “I know the team is eager to compete and do everything possible to try and make this Lift For Life the best one to date.”

 

Inaugural Young Investigator Draft hosted by Uplifting Athletes coming August 18 at Lincoln Financial Field


YID 18 GRAPHICUplifting Athletes is set to tie the theme of the NFL Draft and Rare Disease Research together in Philadelphia.

The inaugural Young Investigator Draft hosted by Uplifting Athletes will take place on Saturday August 18th at Lincoln Financial Field, home of the Super Bowl champion 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.

“The next step in our evolution is the Young Investigator Draft. This is something that we have been looking forward to for quite some time,” Uplifting Athletes Director, Rare Disease Engagement Rob Long said. “And now that it has become a reality, we believe this inaugural event is the beginning of a program that will provide funding for inspirational, intelligent, and driven researchers in the rare disease space providing hope for so many in the rare disease community.”

Investigators will pursue rare disease research in five different areas: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

Similar to the NFL Draft where teams select the top young prospects available they feel can make the most impact, at the Young Investigator Draft, Uplifting Athletes will reveal our 2018 draft class in these five different rare disease categories to join our team.

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.

“We are are fortunate to be holding this event at Lincoln Financial Field,” Long said. “It’s the perfect venue for us to bring together the world of football and hope for the Rare Disease Community.”

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.

For the inaugural Young Investigator Draft, these grants will be given in coordination with Uplifting Athletes’ Priority Partner Foundations. Uplifting Athletes is proud to currently be associated with the following Priority Partners: Boomer Esiason Foundation, Kidz1stFund, Project ALS and the Castleman Disease Collaborative Network and pleased that they will be joining us for this very special celebration.

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 including nearly half the schools in the Big Ten and ACC conferences.

 

Six FCS Chapters kick off 2018 Lift For Life season with successful events


GENERAL L4L 18 GRAPHICUplifting Athletes kicked off its 2018 Lift For Life season with successful events at six FCS Chapters: Colgate, Davidson, Penn, Princeton, Saint Francis and Stony Brook.

The six events combined to raise more than $30,000 for Uplifting Athletes in support of its mission and commitment to our four charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

Each member of the Uplifting Athletes team hit the road this spring to attend at least one of the Lift For Life events. Chapter Manager Brett Brackett made stops at Davidson, Princeton and Stony Brook, Scott Shirley traveled to Colgate, Andy Shay went to Saint Francis and Rob Long visited UPenn.

Each team member shared a brief account of what made these Lift For Life events unique and special.

SAINT FRANCIS: There was a competitive fire that was very obvious the moment you walked into the Red Flash weight room. It was a Saturday morning and normally that doesn’t fire guys up in the middle of the spring practice grind. But the Saint Francis team was ready to crush its goals. The big talk was about who would be the five players to represent each side of the ball in the offense vs. defense bench press max-out challenge to determine the winner. The music was thumping and the players were cheering as guys took their turn knocking out as many repetitions as possible. I was impressed with the commitment the strength and conditioning staff has to what the chapter is trying to accomplish. That’s an overlooked part of the equation to success, and at Saint Francis the Red Flash have an asset that helps make Lift For Life a success. – Andy Shay

DAVIDSON: This spring was Davidson’s first Lift For Life but you couldn’t tell that by the show of enthusiasm bright and early that morning. The entire team plus coaching staff packed into the narrow weight room to see which team could average the most reps of 225 pounds on the bench press. The teams wasted no time surrounding their respective benches and chanting as each rep was performed. As the voices echoed off the walls and the reps increased, so did the total fundraising amounts for each team. Team Cats Are Wild mastered the competition finishing with over $2,500 raised to support Uplifting Athletes. Second place went to Cats Crushing Rare Cancer with nearly $2,400 raised.  The Davidson coaches and players felt the extra motivation to push out extra reps knowing they were supporting such a worthy cause. – Brett Brackett

PRINCETON: The weather could not have been better on the Princeton University campus for their annual Lift For Life event. This only added to the excitement and energy found outside of the Frist Student Center. Two bench racks, two large tractor tires, and one box jump station were enough to provide ample opportunity for the student-athletes to unleash their energy in support of the Rare Disease Community. From the start, the air was electric as the student-athletes cheered and chanted as reps were performed representing another dollar raised in support of Uplifting Athletes. Overall, the offense came away with a clean sweep of all three challenges, however, the defense barely topped the offense in total team fundraising with $2,848 and $2,823 respectively. – Brett Brackett

COLGATE: The country roads leading me back to Hamilton, NY, always afford me the opportunity to reflect on my journey with Uplifting Athletes. Every chapter has a unique story and a special place in my heart…but it’s the drive to-and-from Colgate University in 2008 that I’ll never forget. Days after meeting then Colgate Athletic Director, Dave Roach, at NACDA in Dallas, I accepted his invitation to visit with their student-athletes to talk about expanding the Lift For Life from Penn State to other college campuses. I drove the four hours from Harrisburg to campus and met with Greg, Pat & Stephen in a coffee shop on the square. We outlined the necessary next steps to create the first “new chapter” of Uplifting Athletes. The windshield time allowed me to daydream about how big Uplifting Athletes could become and this was the first step. When I arrived home that evening, I was greeted by an email from Greg that enthusiastically communicated that they had completed ALL of the necessary steps and were ready to go! Returning to Colgate for their 10th Lift For Life was an amazing opportunity for me to use this benchmark to measure our progress and impact…while reaffirming my belief in the student-athletes’ resolve to use their platform and help others. Many of them did not know me, and I did not know them…but it didn’t matter because Uplifting Athletes is bigger than any of us. – Scott Shirley

STONY BROOK: Despite Mother Nature’s best effort to derail the spirits of the team, Stony Brook Uplifting Athletes held its annual Lift For Life on March 7 during one of several snowstorms that hit the east coast in the month of March. The impact that the Stony Brook Lift For Life had on the Rare Disease Community was far greater than the impact the storm had the Stony Brook community that day. The squad divided into five teams for a strength and conditioning competition. In addition, the teams battled to see which team could raise the most money to support Uplifting Athletes. Team Daniels prevailed as the largest part of the overall total of $5,145 raised by Stony Brook. Once the weather cleared, I was able to make a trip to Stony Brook to watch one of their spring practices. The leaders of Stony Brook Chapter have done a tremendous job creating an atmosphere amongst the team that projects a giving spirit and a willingness to leverage their platform as college football players to make a positive impact on the Rare Disease Community. – Brett Brackett

PENN: The 2018 UPenn Lift for Life was full of energy and excitement. The players took turns gathering around the bench racks to encourage their teammates with raucous cheers to get as many reps as possible to benefit Uplifting Athletes. Chapter Presidents Cooper Gardner and Steve Farrell set the pace with their lifts and other teammates followed suit. The Penn team headed in to the summer on a high and with their sites set on capturing another Ivy League title. – Rob Long

Thank you to all of those that supported these exciting and meaningful events. The summer events schedule for our FBS Chapters is in the works.

Enduring neuroblastoma diagnosis with daughter Leah helped Devon Still find a purpose and passion for life after football


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: Neuroblastoma

Brief Description: A childhood or pediatric form of cancer that occurs in the abdomen near the adrenal glands, but it can also occur in other parts of the body. It is often present at birth but may not be detected until later in infancy or childhood. The symptoms of a neuroblastoma may include a lump in the abdomen, pain, diarrhea, or generally feeling unwell. It affects one out of 100,000 children. The exact cause of this tumor is not yet known. Treatment may involve surgery, chemotherapy, radiation therapy and stem cell transplant, and it can be cured when diagnosed at an early stage.

Rare Connection: Former Penn State All-American and Big Ten Defensive Player of the Year Devon Still was battling through his own injury issues to keep his NFL career alive when his then 4-year-old daughter, Leah, was diagnosed with the rare disease neuroblastoma. Leah’s diagnosis made playing football irrelevant to Still. At that moment, he was prepared to walk away from the game to be with his daughter full-time, but realized keeping his health insurance was best for her. With the support of the Cincinnati Bengals, Still decided to use his platform as an NFL player to shine a spotlight on pediatric cancer. Devon used social media to document Leah’s battle with neuroblastoma, quickly raised more than $1 million for research through jersey sales, and the inspiring duo was awarded the Jimmy V Award at the 2015 ESPYs. As a member of the Penn State Chapter during his Nittany Lions career, Still reached out to Uplifting Athletes Executive Director Scott Shirley shortly after Leah’s diagnosis. Scott was a source of support and together they launched a Pledge It campaign to raise funds for research. Leah has been in remission for three years, and after stops in Houston and New York, Still retired from the NFL after the 2017 season. Leah is healthy today, but Devon is far from done using his platform to help others. Since retiring, he launched the Still Strong Foundation to help families with children fighting pediatric cancers and to share his story and hopefully motivate others to fight through their challenges. In Devon’s words he wants to “have an impact that goes well beyond the football field.”

Patient Groups: Children’s Neuroblastoma Cancer Foundation, American Cancer Society.

Getting Social: Twitter: @CncfHope, @AmericanCancer. Facebook: CNCF Hope, American Cancer Society.

Learn More: There are two FDA approved treatments for neuroblastoma, Adreview and Unituxin, and more than 500 clinical trials. 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.

 

 

NFL teams welcome 29 players who gave back during Reps For Rare Diseases campaign


NFL DRAFT-RFRD 18 GRAPHICLess than 1 percent of high school football players actually go on to sign a professional NFL contract.

Those who climb to the top of the football ladder and take the final step from NFL prospect to being drafted or signed are in rare air.

Earlier this year, Uplifting Athletes had 38 of these rare air former college football student-athletes extended their platform as NFL prospects by giving back in support of the Rare Disease Community.

When the stakes were the highest, these NFL prospects made a choice to pledge their performance at either the NFL Combine or individual University Pro Day workouts to help raise awareness and funds in support of Uplifting Athletes’ mission.

Of the 38 NFL prospects who participated in our 2018 Reps For Rare Diseases campaign, 29 of them took that final step and now have the opportunity to continue their football careers in the NFL.

“Congratulations to each and every one of these 29 men for earning this rare opportunity,” said Uplifting Athletes Director of Chapter Development Brett Brackett, who played in the NFL. “To those that give, much is received. It is a just reward that those who took the time to elevate the cause in support of the Rare Disease Community get the opportunity to join a rare fraternity of men to sign an NFL contract after college.

“We wish each and every one of you good health, great success and to always do good with the platform bestowed upon you.”

Of the 29 players that took part in the Reps For Rare Diseases campaign this past March 12 of them were drafted and 17 were signed as undrafted free agents.

That group included a pair of first-round picks including one Top 10 selection, offensive tackle Mike McGlinchey from Notre Dame who was drafted No. 9 overall by the San Francisco 49ers. Someone that participated in Reps For Rare Diseases 2018 was drafted in every round except the third round.

Collectively this group raised nearly $39,000 in support of Uplifting Athletes mission through our four programs – Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.