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


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

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

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

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

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

We are very excited to bring this group together to learn from each other, to strategize together and to foster the sense of teamwork that inspires us all.

 

Sixth annual Uplifting Athletes Gridiron Gala was a night of inspiration


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Uplifting Athletes held its sixth annual Gridiron Gala last weekend at the Keystone Building in Harrisburg, Pa. It was a fantastic evening of celebration focused on positively impacting the rare disease community.

We truly appreciate Dr. Phillip Abbosh, BethAnn Telford, Rob Long and Brett Brackett for joining us and sharing their inspirational stories shining a light on the four Uplifting Athletes programming initiatives.

Dr. Abbosh is a researcher at Fox Chase in Philadelphia and received a research grant from Uplifting Athletes. Telford is a rare brain cancer survivor who has become an advocate and fundraiser. Long is also a rare brain cancer survivor and serves as the inspiration for Syracuse starting an Uplifting Athletes Chapter and Brackett is a former NFL player who served as a past president of the Penn State Chapter.

The support of our Gridiron Gala guests and sponsors goes a long way in helping Uplifting Athletes bring our mission to life across the country as we inspire the rare disease community with hope through the power of sport.

 

Thanks to everyone who came out for the celebration and a special thank you to our sponsors for making the 2016 Uplifting Athletes Gridiron Gala our most successful ever.

Together … We Are … Stronger!

 

 

Uplifting Athletes donates $25,000 to Fox Chase Cancer Center for kidney cancer research in honor of Shimko family


temple-fox-chase-imageUplifting Athletes presented a $25,000 to the Fox Chase Cancer Center in support of kidney cancer research earlier this week.

The research grant to Fox Chase is made in honor of the Shimko Family through the Penn State Chapter of Uplifting Athletes in support of its mission of using college football as a platform to inspire the rare disease community with hope through the power of sport.

This award is for a young investigator working on translational research to benefit the kidney cancer community. The grant from Uplifting Athletes to Fox Chase Cancer Center will enhance the research being done by Dr. Phillip Abbosh under the guidance of Dr. Robert G. Uzzo.

“It’s an honor to put this money to work in the name of the Shimko family. Their support has been unwavering,” said Uplifting Athletes founder Scott Shirley. “This is a great example of our efforts to directly fund more early-stage projects that are focused on the rare diseases [such as kidney cancer] that inspire us, and at the same time, have translational benefits that will potentially help all rare disease patients.”

Michael Shimko Sr. passed away in 2006 from kidney cancer. A huge Penn State football fan, his passing served as an inspiration for his widow JoAnn, and son Michael Jr. to make an impact.

For the last 10 years, the Shimko Golf Outing in Scranton has raised funds to support the Penn State Chapter of Uplifting Athletes and the kidney cancer community.

JoAnn and Michael Jr. joined Uplifting Athletes in Philadelphia for the check presentation, and were able to talk with Dr. Abbosh and Dr. Uzzo about their research and the impact those funds would have. Dr. Abbosh also took them on a tour of Fox Chase including a visit to the lab.

“Over the past 10 years, my mother and I have worked tirelessly with our friends and family to raise funds for kidney cancer research,” Michael Shimko Jr. said. “It’s an honor to support an institution like Temple Fox Chase whose commitment to cancer research is so unwavering.”

The college football student-athlete led Penn State Chapter of Uplifting Athletes has championed the kidney cancer cause since 2003, and has raised more than $1 million in support of research for this rare disease.

Visit upliftingathletes.org to learn more about our mission or click here to help fund life saving research today!

Former Syracuse All-American and rare disease patient, Rob Long, joins Uplifting Athletes team


ROB LONG3Uplifting Athletes is pleased to welcome Rob Long to our team as the Director of Strategic Development.

Rob is a former All-American punter at Syracuse University, but more importantly he was a rare disease patient. In December of 2010, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer, during his senior season.

His battle with a rare disease inspired Rob’s teammates at Syracuse to start an Uplifting Athletes Chapter. And he’s continued to use his platform as a rare disease patient to raise awareness and funds in his spare time.

“It is truly a blessing to love what I do. This opportunity allows me to combine my passions of sports and fundraising to help a cause so near and dear to my heart,” Long said. “At Uplifting Athletes we raise money and awareness that supports rare disease research and patient focused programs.

“As a rare disease survivor I now have the opportunity to help others as so many have helped me.”

At Uplifting Athletes, Rob will be responsible for overseeing our nationwide network of 25 college football student-athlete led Chapters, harvesting major donor gifts and devising and executing growth opportunities for the national non-profit organization.

“We are excited and fortunate to have Rob join the Uplifting Athletes team,” Uplifting Athletes Founder and Executive Director Scott Shirley said. “Rob was an inspiration for Syracuse starting a chapter and it’s been fun to watch Syracuse grow into one of our bigger chapters. His unique perspective as a rare disease patient will serve Uplifting Athletes well today and into the future.”

Rob is a graduate of Syracuse University where he pursued a Masters in New Media Management from the S.I. Newhouse School of Public Communications. He also received a B.S. from the Martin J. Whitman School of Management. He played football all four years at Syracuse and was voted by his teammates as a team captain his final two years.

Prior to joining Uplifting Athletes, Rob spent 12 months as the Director of Sales for ProZone Lockers. A native of suburban Philadelphia, Rob graduated from Downingtown West High School and currently lives in South Philadelphia.

 

 

Celebrating a memorable 2014 for Uplifting Athletes


UA COLLAGEUplifting Athletes has plenty to celebrate in as we near the end of our seventh year as a national non-profit.

The continued support of our expanding coast-to-coast network of student-athlete led chapters is the main reason for our success.

On behalf of the 30 million Americans currently battling a rare disease, and our 25 college football student athlete-led chapters, thank you for helping Uplifting Athletes tackle rare diseases.

In 2014 our network of chapters held 34 events from the signature Lift For Life raising more than $200,000 for rare disease research to our new in-season Touchdown Pledge Drive bringing in almost $36,000.

Uplifting Athletes could not support our network of 25 college football student-athlete led Chapters to raise research dollars and spread awareness without our supporters.

The Heisman Trust became an Uplifting Athletes supporter in 2014 with a chapter expansion and growth matching grant. Our chapters raised nearly $250,000 for rare disease research through its events. And the Penn State Chapter eclipsed the $1 million raised threshold since 2003 in support of kidney cancer research.

So as 2014 comes to a close we can all join together to celebrate the ability of our chapters this year to capitalize on the grand stage of the college football season – the time of year when the student-athletes are the most relevant.

“I am very grateful to you for bringing Uplifting Athletes to Arizona and teaching my son the value of service. feel like his experience with this has been more beneficial than any class or football game could be. I am very proud of Brendan for many things, but his involvement with Uplifting Athletes is among the top.” – Jodi Murphy, Mom of Arizona Chapter President Brendan Murphy

For the first time in our seven-year history, each Uplifting Athletes Chapter had the opportunity to support their individual chosen rare disease with an in-season Touchdown Pledge Drive.

Football is all about teamwork, and it took a cohesive team effort by everyone involved with Uplifting Athletes to make these awareness and fundraising campaigns happen at 13 chapters nationwide in 2014.

With Uplifting Athletes becoming directly relevant during the college football season for the first time, our platform is now bigger and stronger.

And we want to continue to have a loud voice in 2015 on this grand stage of college football in order to continue our support of those fighting any one of the 7,000 rare diseases.

“Uplifting Athletes has done so much for me. This organization brought me closer to my college teammates and connected me with some tremendous people in the Big Ten Conference. Working with Uplifting Athletes means being part of something bigger than the game.” – Chris Borland, San Francisco Forty-Niners LB and Wisconsin graduate

On the road with Uplifting Athletes Chapter Manager Becky Mayes during Touchdown Pledge Drive season


HeadshotBecky Mayes is the Chapter Manager at Uplifting Athletes. The 2012 Penn State graduate directly oversees all 25 Chapters in our network and works with them to coordinate all events and campaigns aimed at raising awareness of and research funds for rare diseases.

Through her position and duties, she spent most of this fall on the road preparing 12 Chapters to hold Touchdown Pledge Drives, and working with other current and perspective Chapters to lay the ground work for future events.

In the pursuit of a successful inaugural Touchdown Pledge Drive season Becky flew more than 13,000 miles through 14 different airports and drove more than 6,500 miles through 22 states.

Back home in Harrisburg, Pa. – the location of our national non-profit headquarters – for the Holiday Season, we sat down with Becky to review and recap a busy college football season on the road.

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Nebraska Pediatric Brain Cancer Awareness Game

QUESTION 1: Share with us what your experiences were this fall working closely with the college football student-athletes during the season for the first time compared to the offseason?

MAYES: Time availability of college football players is drastically different over the spring and summer when most Chapters plan their Lift For Life event versus the fall.

This football season was a big test with most of our Chapters attempting to hold a campaign through the Touchdown Pledge Drive. I needed to make sure this campaign was as simple as possible to execute while still being attractive and engaging enough for their fans to want to participate.

From a campaign planning perspective, there were no operational logistics involved which was a huge help for the student athletes – no need for them to worry about event parking, ticket sales or permit registrations. They just needed to focus on two main things: marketing their Touchdown Pledge Drive before their selected game and scoring touchdowns.

Although this campaign has less moving parts, these student-athletes have very little time available to devote to preparing for it. For me, that meant needing to be much more flexible with my time. The players at the University of Washington can’t talk until after practice on Tuesday? That means I’ll be up until at least 11pm EST to make sure they know what their next steps are and how to execute them.

Since this was also the first time many of our Chapters held a Touchdown Pledge Drive, I had a lot of Chapter visits to make early in the year. I had meetings with not only with the student-athlete leadership team but also coaches and athletics staff making sure all bases were covered and everyone was comfortable and up to speed with this campaign every step of the way.

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Florida State Seminoles “Unconquered” Statue

QUESTION 2: What surprised you the most about running a first-year fundraiser this fall for 9 of our 12 Chapters?

MAYES: I pretty much went into this fall with open eyes unsure of what to expect. We have had three Chapters hold Touchdown Pledge Drives before but none with the automated software we have now.

Colgate, Princeton and Florida State all kept track of pledges manually last year which was obviously very time consuming and something we needed to find a solution to this year which we did through Pldgit.com. Even with a bit of experience last year holding three Touchdown Pledge Drives, I was most surprised by the feedback we got from the Chapter supporters and Chapter leaders.

The fans loved knowing that with every touchdown celebration, they were part of raising rare disease research funds through their pledge. Similarly, the Chapter leaders relished every touchdown a bit more knowing that meant more research funds raised for a cause close to them.

It became more than just about six points on the scoreboard, and I could see the positive impact that had for both the players and their fans.

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Baylor Homecoming & Touchdown Pledge Drive Game

QUESTION 3: As luck would have it you were in the stadium for some of the biggest college football games this season. Give us the one that stands out the most to you and why?

MAYES: I’ve definitely been able to witness some great football games live this year, attending at least one from each of the five major conferences. Every team and university has its own traditions, which are all fantastic to experience in person.

However, a highlight this year would be visiting Baylor for their homecoming and Touchdown Pledge Drive game on November 1st against Kansas in Waco. It was my first game in the Bears’ new stadium – which is gorgeous with the big scoreboard overlooking the river that divides it from the rest of the campus.

For the first homecoming game in the new stadium, Baylor striped the stadium green and gold coordinated by section ahead of time. The weather was great, and the Bears had an explosive day on offensive – scoring six touchdowns and raising more than $6,000 for Cerebral Palsy research.

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Fordham’s Victory Bell

QUESTION 4: Now that Uplifting Athletes Chapters have two fundraising opportunities on a yearly basis, how does that change the landscape of carrying out their mission beyond the obvious chance to raise more dollars?

MAYES: One of the biggest things we’ve struggled with is how to enable and allow our Chapters to engage their fan base and support network during the college football season – when they have the most people tuned into their team and the least amount of time to focus on anything besides school and football.

Having our Chapters able to now hold Touchdown Pledge Drives during the fall opens up the biggest opportunity for them to raise awareness and research funds for a rare disease that hits home for them.

This campaign also creates a more active year-long conversation about what rare diseases are, how so many people have been impacted by them, and what can be done to help.

We are definitely a huge step closer to creating national awareness for the 30 Million Americans who currently suffer from any one of the more than 7,000 rare diseases where more than 95 percent of those currently have no FDA approved treatment option.

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Penn State vs. Ohio State White-Out

QUESTION 5: With all those miles traveled and cities visited on the road, share with us one travel experience you’d like to forget but won’t be able to forget?

MAYES: As with anyone who is used to life on the road, I’ve become somewhat unphased by travel mishaps, crazy weather and sleepless nights. Just this fall, I’ve opened up the Dallas airport at 3:30 a.m. to fly to Phoenix so I could then drive up to Flagstaff for a 1 p.m. meeting that day.

I’ve had multiple flights cancelled which meant landing at an airport different from where I left my car and needing to rent a car one day later to retrieve my car. I drove nearly three hours to the closest available hotel after a Clemson-Florida State game in Tallahassee that ended around midnight

I was completely unprepared with no coat for a surprise cold weather spell in the beginning of October at the Illinois Chapter Touchdown Pledge Drive game at Memorial Stadium against Purdue. I’ve been on the road for more than two-thirds of this football season and have tried to embrace every part of what that entails.

From these past three months, there are a lot of very special memories – many of them coming from curveballs thrown my way. Regardless of what city I wake up in or how often my watch is set in the wrong time zone, I feel so incredibly lucky to have the opportunity to enable college football players to make an incredible impact in the rare disease community.

Helping them raise more than $36,000 this fall through their Touchdown Pledge Drives makes every part of this worth it.

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View Flying into Chicago in September

Blindsided by SCAD: Spontaneous Coronary Artery Dissection


SCAD Board Alliance Chairperson Katherine Leon meets the players from the Maryland Chapter at NIH as part of National Rare Disease Day.

SCAD Alliance Board Chairperson Katherine Leon meets the players from the Maryland Chapter at NIH as part of National Rare Disease Day.

Uplifting Athletes supports the larger rare disease community in addition to the rare diseases our 25 student-athletes led chapters champion. We welcome any rare disease organization to share their story with our audience. Spontaneous Coronary Artery Dissection (SCAD) is a rare, sometimes fatal traumatic condition that is similar to a heart attack. The coronary artery develops a tear causing blood to flow between the layers, which forces them apart. Nearly 80 percent of SCAD cases affect women. The SCAD Alliance raises awareness and focuses on collaboration in the quest to empower survivors and health partners in the fight against this rare disease.

By Katherine Leon

It’s rare. You either die, need a heart transplant or get lucky … like you.

These words, spoken by my well-meaning cardiologist, still ring in my ears 11 years later. I say well-meaning because his intent was a bit of tough love to jolt me back to the business of caring for my newborn and 20-month-old sons.

But he wasn’t the one who’d had what is referred to as a “widow maker heart attack” out of the blue caused by a torn artery.

He wasn’t the one who was 38, never smoked, had pristine arteries, and lifelong blood pressure of 94 over 60.

He wasn’t the one who was struggling to recover from emergency double bypass surgery and a detached rib – collateral damage of the surgery.

And he didn’t have to worry if his kids would someday have a heart attack from a rare event that is now called spontaneous coronary artery dissection (SCAD).

My doctor had no pamphlet for me because he said the cause of my heart attack had never been researched. It was too rare to research.

In fact, he said I’d never meet another person who’d had SCAD.

It was really hard to understand that in 2003, a heart attack killing someone at such a young age had never been researched.

That day I made up my mind. Before I checked out of this world, I would get research started and make sure that anyone else diagnosed with SCAD would know exactly what happened, why, what to do about it, and – hopefully – how to prevent it from happening at all.

I would find the patients and bring them to the researchers. It seemed logical. If the reason SCAD hadn’t been researched before was access to survivors, how could researchers say no if the patients came to them?

My good fortune was to be alive in the age of the internet and searching online became my obsession.

When the boys were asleep at night, I would search for any and all terms related to heart attack, torn artery, dissection … whatever I could think of to find fellow SCAD survivors.

It took several years to find the first few people, but once our conversations became searchable in Google, the numbers began to grow. By 2009, I had a document that summarized the experience of more than 70 SCAD survivors worldwide and several family members of those who had died.

With data and a research agenda, I pursued an opportunity to meet a researcher.

While attending a heart disease symposium at Mayo Clinic, I got up my nerve to ask a cardiologist to be the first to research SCAD. From her background and role at Mayo, she seemed like the one person in the world who might just hear me out. And she did. It didn’t bother her that my fellow patients were people I’d never met in person.

She threw herself into the task of researching SCAD using participants I’d recruited on social media. After an intensive Institutional Review Board process, Mayo approved first a pilot study. And in September of 2011, a global registry of SCAD patients and a DNA biobank was launched.

The registry has grown to include nearly 400 participants. The DNA biobank holds several hundred samples.

Other institutions worldwide, including the University of British Columbia, University of Leicester in the United Kingdom, and Massachusetts General in Boston, have now launched clinical studies of SCAD as well. But there is a problem.

As encouraging as this progress sounds, every day patients go undiagnosed as we wait for the research to find answers. It is still common for patients to be told the heart isn’t the problem.

We’re young. We’re athletes. We don’t have traditional risk factors for heart disease. Doctors and emergency departments must be on the watch for SCAD.

Our average is 42 but we know men and women as young as 20 who are struggling with the aftermath of SCAD, which includes everything from depression to even heart transplant in some cases.

We must educate doctors while the science develops. The more we educate the more lives we save by preventing heart attack and sudden cardiac arrest from SCAD. That’s the mission of SCAD Alliance. Help us stop the blindside.