Western Michigan announces inaugural Lift For Life to support the Rare Disease Community set for June 28


The Western Michigan Chapter of Uplifting Athletes will hold its inaugural Lift For Life to support the Rare Disease Community on Friday, June 28.

Lift For Life is the signature fundraising event for the Western Michigan University Chapter of Uplifting Athletes. WMU 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.

The 2019 Western Michigan Chapter Lift For Life is a private event this year.

“Lift for Life and Uplifting Athletes has broadened our sense of purpose beyond football here at Western. We realize that we have an opportunity to be a voice for those who do not have one,” Western Michigan Chapter President Justin Tranquill said. “Our program is thankful to have a small part in inspiring hope within the Rare Disease Community”

The Western Michigan Chapter Lift For Life will be a competition featuring 225-bench press repetitions between eight teams comprised of 2019 Western Michigan Broncos players.

Fans and supporters can pledge to any of WMU’s eight teams for the average number of bench press repetitions that particular team averages. So choose your favorite team and back that squad by visiting the WMU Lift For Life fundraising site and pledging now! You can also make a flat donation to the Western Michigan Chapter.

The proceeds from the Western Michigan 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 Western Michigan 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 Western Michigan University football program started tackling rare diseases in 2018 when Broncos Jamauri Bogan and Justin Tranquill founded the chapter.

The 2018 Touchdown Pledge Drive was the Broncos’ first event to support the Rare Disease Community. Western Michigan also hosted a Rare Disease Awareness Game against Syracuse to open the 2018 season. Earlier this year Bogan, a former WMU star running back, participated in the 2019 Uplifting Athletes Reps For Rare Diseases campaign.

Please support the Western Michigan Chapter and help the Broncos reach their impressive $5,000 team Lift For Life goal.

Get to know Rob Long, the new Executive Director of Uplifting Athletes


Rob Long became the second Executive Director of Uplifting Athletes at the end of 2018. Prior to taking over as the Executive Director, Long served as Uplifting Athletes’ Director of Rare Disease Engagement for nearly two years.

Rob has a steadfast commitment and connection to the Rare Disease Community as a rare brain cancer survivor . As a former star college football student-athlete, his passion and drive to advance the mission of Uplifting Athletes is inspirational.

The following interview with Rob was published last month by Global Genes as part of its Rare Leaders series. The interview is being reprinted as it was published.

Introduction

How did you become involved in rare disease: I was diagnosed with brain cancer in December 2010. My teammates on the Syracuse University football team started the Uplifting Athletes chapter at the university in my honor. I became fully involved in supporting and helping the rare disease community.

Previous career: Student

Education: B.S. from Whitman School of Management at Syracuse University and an M.S. from the Newhouse School of Communications at Syracuse University.

The Organization

Organization’s mission: Our mission is to inspire the rare disease community with hope through the power of sport.

Organization’s strategy: Our strategy is to leverage the platform that athletics has in this country and around the world to bring awareness, support, and funds to the rare disease community.

Funding strategy: We have two main areas of revenue. We have grassroots fundraising through our chapters and corporate sponsorship for our programs.

What’s changing at your organization in the next year: We are undergoing a lot of growth. We’re hoping to add staff for the first time in a few years and continue to execute on our strategic plan. We are also working to grow our audience in college football and in the rare disease community.

Management Style

Management philosophy: My management philosophy comes down to three words: plan, purpose, and execution. We want to make sure that we have a plan and a purpose for everything that we do and a way for successfully executing that. I think it’s one of the things for us that’s been a big shift to where we are now. We want to be able to move forward in a manner that will allow us to be successful.

Guiding principles for running an effective organization: Clear direction and accountability are essential. It’s pretty much answering the question, “Is what we are doing in the best interests of the rare disease community and at the same time allowing us, Uplifting Athletes, to carry out our mission for years to come?”

Best way to keep your organization relevant: The best way to stay relevant is to continue to network and grow in college football and within the rare disease community. We haven’t even come close to reaching a saturation point in either one of those areas. As we continue to grow and build a network in both of those, we’ll stay relevant.

Why people like working with you: We have the unique ability to bring sports, which is something that’s mainstream, and connect to the cause of the rare disease community. Sports has the resources of awareness and money that the rare disease community is desperately in need of.

Mentor: There are a lot of people who have helped me tremendously along the way. One of the people that we work with here is John Trzeciak, who is a volunteer. John has been a mentor from a business standpoint and Jean Campbell on the rare disease side has been a mentor with engaging the rare disease community. Jean is a 30-plus year veteran of the rare disease space and has worked with NORD and several advocacy organizations.

On the Job

What inspires you: The people we work with and the people we are able to have an impact on. Also, for me personally, what my family has been through and the struggle that we’ve had with cancers and rare diseases. I want to share that story to help make a positive impact out of something that’s been really quite tough.

What makes you hopeful: Getting to meet the next generation of rare disease researchers and young investigators. The passion and intelligence that they have and that they bring every day.

Best organization decision: About six months after I started here, we hired Brett Brackett as Director of Sports Impact. Brett played football at Penn State. He also ran the Uplifting Athletes chapter at Penn State and played five years in the NFL. When he retired, we convinced him to join our team and he’s been just an incredible piece of what we do and has allowed us to get to where we are.

Hardest lesson learned: There’s a long way to go in the rare disease space and we’re not going to be able to fix it all ourselves in a short period of time. It’s going to take collaboration and it’s going to be a long haul to get to a point where we are satisfied.

Toughest organization decision: The toughest decision is to stay completely focused and committed to our mission and strategy so that we can use our core competencies as an organization to provide the biggest benefit to the rare disease community as a whole. It is hard to not jump at opportunities as they arise, but stick to the plan and process that we have developed. Unfortunately, that means not always being able to help everyone all the time, which can be frustrating, and a really tough decision.

Biggest missed opportunity: Not having the resources or funding to hire certain people at certain times.

Like best about the job: I absolutely love what I do.

Like least about the job: The fact that you constantly come across great people who have been dealt really crappy hands.

Pet peeve: Not always having money or resources to execute exactly what we would want as an organization.

First choice for a new career: I’d love to get to play in the NFL.

Personal Taste

Most influential book: The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk. It’s about post-traumatic stress disorder and it is something that I recently had been diagnosed with and had been dealing with for the last eight years. It really helped me understand what I was feeling, especially working in this line of work, where my trauma is something that I had to face on a daily basis when I talked about my story and my diagnosis. It helped me with an understanding of what I was going through and how to manage it so I could continue to do what I love.

Favorite movie: Good Will Hunting

Favorite music: I love all music. I don’t have a specific genre. I listened to Waterfalls by TLC 10 times today.

Favorite food: Eggs over easy with toast and bacon

Guilty pleasure: Sour gummy worms

Favorite way to spend free time: Doing anything with my wife. We just got married on May 25th.

Florida State Chapter Lift For Life to support the Rare Disease Community scheduled for June 22 has been postponed


The Florida State Chapter of Uplifting Athletes will hold its Lift For Life to support the Rare Disease Community scheduled for Saturday, June 22 at 11:00 a.m. inside the Albert J. Dunlap Athletic Training Facility has been postponed.

We will provide an updated date and time when it becomes available.

Lift For Life is the signature fundraising event for the Florida State University Chapter of Uplifting Athletes. FSU 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.

“Lift for life and Uplifting Athletes are a special part of Florida State Football. We are all about helping out those who are in need and kids that aren’t able to do the things that they desire,” FSU Chapter President and linebacker DeCalon Brooks said. “My teammates and I are proud to team with Uplifting Athletes to host our 2019 Lift for Life. We find it very fulfilling to raise money for research towards rare diseases. We are proud to help and be a part of tackling rare diseases.”

The 2019 FSU Chapter Lift For Life will be a competition featuring 225-bench press repetitions between the 10 football student-athlete led fundraising teams. The Seminoles’ Lift For Life will also include an obstacle course, 100-pound dumbbell holds, trolley pushes and a tug of war.

Fans and supporters can pledge to any of FSU’s 10 teams for the average number of bench press repetitions that particular team averages. So find your favorite Florida State football player and back his squad by visiting the Florida State Lift For Life fundraising site and pledging now! You can also make a flat donation to any team.

The proceeds from the Florida State 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 Florida 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 Florida State Chapter started tackling rare diseases in 2013 when it joined Uplifting Athletes. Former FSU tight end Kevin Haplea started the Uplifting Athletes Chapter in Tallahassee. His inspiration came from former Seminoles head coach Jimbo Fisher and the battle one of his sons, Ethan, was enduring with the rare blood disorder Fanconi anemia.

Please support the Florida State Chapter and help the Seminoles reach their impressive $20,000 team Lift For Life goal.

Penn State Chapter set to host 17th annual Lift For Life on July 12 inside Holuba Hall


The Penn State Chapter of Uplifting Athletes will hold its 17th annual Lift For Life to support the Rare Disease Community on Friday, July 12 inside Holuba Hall starting at 5:00 p.m.

Lift For Life is the signature fundraising event for the Penn State Chapter of Uplifting Athletes. Penn State 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.

The Penn State Chapter Lift for Life will again feature the Nittany Lion offense taking on the defense in a series of competitions. The event is open to the public and the doors will open at 4:30 p.m.

“It has been a privilege to be a small part of such a big impact in many families lives,” Penn State Chapter President and quarterback Sean Clifford said. “Penn State is driven to help the Rare Disease Community because we know how important this cause is, and we see the significance in the bigger picture.”

Penn State football fans and supporters can select to support either the offense or defense and pledge for the average number of bench press repetitions they put up during the 2019 Lift For Life. So choose one side of the ball and back that team by visiting the Penn State Chapter Lift For Life fundraising site and making a pledge. You can also make a flat donation to either team.

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

Clifford is the new Penn State Chapter President and Stoll takes over as the vice president. The other 2019 officers are: defensive tackle Evan Presta, treasurer; offensive lineman Mike Miranda, director of operations; safety Justin Neff, director of player logistics; long snapper Joe Calcagno, secretary.

The Penn State Chapter will also conduct a Kids Clinic during Lift For Life from 5:30-6:30 p.m. Cost to participate in the clinic is $15 per child. Each participant in the Kids Clinic also will receive a Lift for Life T-shirt. 
 
More than 80 football squad members are expected participate in the Penn State Chapter Lift for Life and will be available for an autograph session immediately after the event in Holuba Hall. This year’s Penn State Football poster will be available, while supplies last.

The proceeds from Penn State 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.

Penn State is the charter Uplifting Athletes Chapter and was started in 2003 by Uplifting Athletes Founder Scott Shirley. The Penn State Chapter serves as the catalyst for what has become a nationwide movement.

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.

“Each year around this time I am reminded of how special the Penn State Community is and how it embraces the football team beyond the field through their annual Lift For Life,” said Uplifting Athletes Director of Sports Impact Brett Brackett, a former Penn State Chapter President who played in the NFL. “Over 17 years, the Lift For Life has become a tradition for Penn State Football to showcase the results of the hard work they put in throughout the offseason through a strength and conditioning challenge aimed at using their platform to raise money and awareness for rare diseases.

“I am excited for Sean and the entire leadership team to see how this group can grow the impact. With the event returning to the popular weekend of ArtsFest, I am looking forward to once again seeing Nittany Nation show up strong to support the Penn State Chapter and the Rare Disease Community.”

Northwestern Chapter announces annual Lift For Life to support the Rare Disease Community set for May 24


The Northwestern Chapter of Uplifting Athletes will hold its annual Lift For Life to support the Rare Disease Community on Friday, May 24 at 4:00 p.m.

Lift For Life is the signature fundraising event for the Northwestern Chapter of Uplifting Athletes. Northwestern 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.

The 2019 Northwestern Chapter Lift For Life is open to the public and will take place at Martin Field.

“Uplifting Athletes is the first time I have been able to use my voice as a student-athlete to help others,” Northwestern Chapter President Peter Snodgrass said. “Watching my brothers rally around the Rare Disease Community is truly THE most inspiring experience I have had at Northwestern. As a leader of our chapter, I have seen first hand the value that my teammates and I can give to the Rare Disease Community.”

The 2019 Northwestern Chapter Lift For Life will be a competition featuring 225-bench press repetitions between the nine football student-athlete led fundraising teams.

Fans and supporters can pledge to any of the Wildcats’ nine teams for the average number of bench press repetitions that particular team averages. So choose your favorite team and back that squad by visiting the Northwestern Chapter Lift For Life site and pledging now! You can also make a flat donation to any team.

The proceeds from the Northwestern 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 Northwestern 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.

”I love football… but even more than that, I love the relationships that football has brought into my life. I believe that Uplifting Athletes is extending these unbreakable bonds into a community that needs them more than ever,” Northwestern Chapter Vice President Joe Spivak said. “I think most of the guys all agree that the money we raise is awesome, but to be able to serve as an example and extension of FAMILY to these families is what is really awesome! Uplifting Athletes brings us all together on the same team.”

When the Northwestern Chapter was formed in 2011 it was former Northwestern and Notre Dame coach, the late Ara Parseghian, and his support of the rare disease Niemann-Pick Type C that inspired the Wildcats. More recently, the leaders at Northwestern chose to use a personal relationship and added ALS as part of the motivation to support the Rare Disease Community through Uplifting Athletes.

Please support the Northwestern Chapter and help the Wildcats reach their impressive $13,000 team Lift For Life goal.

Seven chapters make for a busy and successful Spring Lift For Life schedule


This was a busy spring with seven chapters holding Lift For Life events in support of Uplifting Athletes and its mission to inspire the Rare Disease Community with hope through the power of sport.

Penn, Stony Brook, Saint Francis, Davidson, Lehigh, Marist and Princeton, all FCS college football programs, recently held their annual Lift For Life events.

2019 Penn Chapter Lift For Life

For the Lehigh and Marist Chapters, 2019 was their inaugural Lift For Life as part of the Uplifting Athletes team.

“Starting an Uplifting Athletes chapter at Marist is an opportunity I couldn’t pass up on. I’ve always wanted to get involved in the community and help those who need it and with Uplifting Athletes I believe that’s possible,” said Red Foxes safety and Marist Chapter founder Paul Olivett. “On behalf of Marist and the football team, we look forward to being a part of the many college teams tackling rare diseases.”

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

2019 Lehigh Chapter Lift For Life

Lift For Life is unique at each university campus, but the driving force behind the event is the same for all our chapters nationwide. Lift For Life is an opportunity for teams to take a regular strength and conditioning workout and use it to raise money and awareness for the Rare Disease Community.

The Davidson Chapter reached a milestone this year when it became only the fourth Uplifting Athletes Chapter to raise more than $10,000 in each of its first two Lift For Life events joining Penn State, Boston College and Notre Dame in rare fundraising air.

“It’s been incredible to see the development and growth of our Uplifting Athletes Chapter at Davidson College,” Davidson Chapter leaders and co-founders George Hatalowich and Kevin Stipe said. “Our success is truly a testament to the players, coaches, and athletic department that bought into the organization and our chapter’s goals.

“We are extremely proud to be a part of Davidson’s Chapter and we can’t thank the Uplifting Athletes organization enough for their continuous support and guidance throughout this entire process.”

2019 Davidson Chapter Lift For Life

The seven events to kick off the 2019 Lift For Life schedule this spring raised more than $50,000 to support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

“It is an honor to be able to use our platform to help raise awareness and support the Rare Disease Community through Uplifting Athletes,” Saint Francis Chapter President Nick Rinella said. “We are all proud to be part of a team that is working so hard to tackle rare diseases.”

Today, the challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. Each chapter is part of the nationwide network of teams that are uniquely positioned to educate and engage their local community to shine a spotlight on the rare disease cause.

Lift For Life will continue throughout the summer with the FBS schools kicking their offseason training into high gear along with a couple FCS schools that opted for summer events instead of the spring.

“Uplifting Athletes has given me a humbling and incredible opportunity to help give back to the Rare Disease Community,” Princeton Chapter President and offensive lineman Luke Aschenbrand said. “Meeting rare disease patients who appreciate the effort we put in and are thankful for the outreach of their message makes what we do worth it.

2019 Princeton Chapter Lift For Life

Princeton Chapter announces annual Lift For Life to inspire the Rare Disease Community set for May 7


The Princeton Chapter of Uplifting Athletes will hold its annual Lift For Life to support the Rare Disease Community on Tuesday, May 7th.

Lift For Life is the signature fundraising event for the Princeton Chapter of Uplifting Athletes. Princeton 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.

“Uplifting Athletes has given me a humbling and incredible opportunity to help give back to the community,” Princeton Chapter President and offensive lineman Luke Aschenbrand said. “Meeting rare disease patients who appreciate the effort we put in and are thankful for the outreach of their message makes what I do worth it.”

The 2019 Princeton Chapter Lift For Life will be a competition on the average number of 225-pound bench press competitions among the six fundraising teams. The event is open to the public and will start at 4:45 p.m. outside the Frist Campus Center

Fans and supporters can select any one of the six teams and make a pledge for the number of bench press repetitions that team averages. So choose your favorite 2019 Princeton player on any of the six Tigers’ Lift For Life teams and support them by visiting their 2019 Lift For Life site. You can also make a flat donation to any team.

The proceeds from the 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 Princeton 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 Princeton Chapter started tackling rare diseases in 2011 when it joined Uplifting Athletes. The football student-athlete led Princeton Chapter serves the Rare Disease Community in honor of Jordan Culbreath, a former Tigers running back.

Culbreath was diagnosed with a rare blood disorder and battled through his rare disease diagnosis to return to the field and finish his playing career. His inspiring story of hope not only led his Princeton teammates to form a chapter, Culbreath was also honored as the 2011 Uplifting Athletes Rare Disease Champion.

Please support the Princeton Chapter and help the defending Ivy League champions reach their impressive $9,000 team Lift For Life goal.