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

 

 

For Seattle Seahawks WR Malik Turner the rare disease cause is personal


Seattle Seahawks rookie wide receiver Malik Turner is passionate about the rare disease cause.

He took part in Lift For Life as a member of the Illinois Chapter of Uplifting Athletes. Turner also supported his cause by participating in the Uplifting Athletes Reps For Rare Diseases campaign for his NFL Pro Day.

It was during his Reps For Rare Diseases campaign that Turner made the connection that one of his University of Illinois classmates, Holt Erikson, was a rare disease patient. Once he learned more about Holt’s story, Turner felt a deeper connection to his friend.  The rare disease cause became personal.

“What draws me closer to the rare disease cause is personally connecting with someone that has gone through the struggle,” Turner said. “That definitely drew me closer to it.”

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That deep and personal relationship moved Turner to do everything in his power to use his platform as an elite athlete to inspire the Rare Disease Community with hope.

And Turner was not going to let an injury derail his commitment to making a difference for the Rare Disease Community.

Two weeks prior to his Pro Day workout Turner suffered a fracture in his foot. That injury meant he would not be able to participate in the biggest workout of his life.

Turner felt compelled, though, to honor his commitment to the rare disease cause and on his Pro Day still participated in the bench press. With his friend Holt on his mind, Turner went out and beat his bench press goal by one repetition despite being injured.

MALIK 1When he made it to the NFL, Turner wanted to continue that deeply personal 1-on-1 relationship with those battling rare diseases.

Once Turner secured a spot on the Seahawks roster, he almost immediately started looking for ways to do even more to support his cause. Working together, Turner and Uplifting Athletes teamed up to host an Uplifting Experience for a rare disease patient family in the greater Seattle area.

Earlier this month Turner hosted ADNP patient Tony Sermone, his twin brother Rocco and Tony’s parents, Sandra and Rich at the Seattle Seahawks’ Virginia Mason Athletic Center for several hours.

They toured the Seahawks locker room, interacted with other Seattle players, worked out on the practice field together and Turner walked them through a day in the life of an NFL player.

It was during this experience that Turner was able to show his passion for the rare disease cause – unveiling the cleats he will wear for the NFL’s My Cause My Cleats campaign during this Sunday’s game at home against San Francisco.

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Above the Seattle skyline painted on the on the back of his right cleat, are the initials “T” and “S” in Tony’s honor. The initials “H” and “E” are on the back of left cleat above the block “I” University Illinois logo to honor Holt.

“I needed to be more aware of exactly what rare means and how it’s not funded and needs more attention. Connecting to Holt and Tony made me want to dig deeper,” Turner said. “I didn’t know whom I impacted and when I saw that … it impacted me.

“Those little things that are bigger than me and bigger than football is something that’s important to me.”

Turner has chosen the Rare Disease Community as his cause and is supporting Uplifting Athletes during the NFL My Cause My Cleats campaign.

He is asking you to support his cause by making a donation through his Tackle Rare Diseases campaign.

The proceeds raised by Turner’s My Cause My Cleats campaign supports the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

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Special day on campus for Princeton-Penn rivalry game involves Rare Disease Community


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You could feel the electricity in the air Saturday on campus as the Princeton football team prepared to host rival Penn in the final game of the season.

The Tigers were on the cusp of an undefeated season and claiming the Ivy League championship.

Saturday was also a special day for the Rare Disease Community inside Princeton Stadium.

The leaders of the Uplifting Athletes chapters at each university picked this match-up to serve as a Rare Disease Awareness Game to show their ongoing support for the rare disease cause.

Players from each team wore Uplifting Athletes stickers on their helmets and pulled on blue #WeTackleRare wristbands in a show of unified support for the Rare Disease Community each chapter champions.

And with the help of Uplifting Athletes Executive Director Rob Long and Director Sports Impact Brett Brackett, the Masciantonio family from The For The Love Of Grace Foundation was able to attend their first college football game together.

It was a busy Saturday in Princeton, New Jersey.

Gianna Masciantonio is a 4-year-old rare disease patient who is diagnosed with a rare brain tumor. Her parents, Joe and Kristen, started the For The Love Of Grace Foundation in honor of their daughter.

“We wanted to help others in the same situation,” Kristen Masciantonio said. “We give 100 percent of what we raise to research and to help families. We don’t have any overhead. I mean, who can you not help other families, right?”

In between the first and second quarters Gianna, her older brother Dominic, Joe and Kristen and Uplifting Athletes staff were recognized on the field as an extension of the hard work Princeton and Penn football programs put forth to support the Rare Disease Community.

“People just don’t fully understand what families like ours and others like ours go through,” Kristen Masciantonio said. “This is an important part of the support we need to feel. Support is important.”

Princeton went on to beat Penn to complete their perfect season and hoist the trophy as Ivy League champions. On the field they are competitors, but off the field the Tigers and Quakers football student-athletes share a common bond of shining a spotlight on the Rare Disease Community.

Thank you to the athletic departments at Princeton and Penn for supporting the football student-athletes of each chapter to make this a special day that extends well beyond 60 minutes of football.

 

 

Penn and Princeton football programs team up to make 110th meeting between the rivals Saturday a Rare Disease Awareness Game


PENN PRINCETON RDAG 18 GRAPHICUplifting Athletes is proud to announce that the Princeton and Penn football programs have joined forces for their upcoming 2018 regular season finale to shine a spotlight on the Rare Disease Community.

The chapter leaders from each school, with the support of both universities, worked together to make the match-up between the Tigers and Quakers on Saturday, November 17 at Princeton Stadium an Uplifting Athletes Rare Disease Awareness Game.

Rare disease patients, caregivers and families will be in attendance at this traditional rivalry game, and will be hosted by each university to show their ongoing support of the rare disease cause.

Players from each team will have Uplifting Athletes stickers on their helmets and wear #WeTackleRare wrist bands in a show of unified support of the Rare Disease Community each chapter champions.

“In the competitive landscape of college football, Penn Princeton is one of the great rivalries,” Uplifting Athletes General Manager Brett Brackett said. “We were thrilled when our two chapter leaders agreed to put their on-field differences aside to share game day with local rare disease patients, and add another dimension that shows ongoing support for the entire Rare Disease Community.”

During one of the television timeouts during the game, rare disease patients, families and caregivers will be the honored on the field in recognition of the two programs coming together to support one cause.

During the month of October each school participated in the month-long Uplifting Athletes Touchdown Pledge Drive to support the Rare Disease Community. The chapter leaders of each school wanted to extend that opportunity to financially support their Touchdown Pledge Drive to include this rivalry game and make each touchdown scored matter more.

Thank you to the athletic departments at Princeton and Penn for supporting the football student-athlete leaders of each chapter by allowing them to recognize the Rare Disease Community as part of this game.

One mother’s uplifting ALGS rare disease journey for her family


 

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Uplifting Athletes hosted Roberta Smith and her daughters for an Uplifting Experience at the August 31st Rare Disease Awareness Game between Syracuse and Western Michigan in Kalamazoo, Michigan. We were fortunate enough to learn Roberta’s Rare Disease story and we are honored to provide the platform for Roberta to share her story.

By Roberta Smith

You look left, you look right but it’s just you. Starting in rare is like walking a path alone.

Rare, most often, is not something you find common ground on with anyone around you.

Meeting others traveling a similar path is often arduous and challenging. Geographic distance or unsuccessful searching contribute to the lack of connection.

Rare disease can feel isolating. It can be hard for family, friends, neighbors, and co-workers to fully understand what is happening and it can be hard for anyone to explain.

Often, when people try to relate, they connect by sharing personal medical experiences, Google search results or home remedies. Under the stress, this tends to drive a wedge in relationships and over time makes them uncomfortable. Attempts to explain the medical turmoil or include loved ones in the experience becomes very difficult, despite good intentions all around. This leaves a rare disease family feeling alone in many cases and that’s a horrible place to be when trying to survive a rare disease life change and the challenges that come with it.

I never imagined the weight or impact of “alone” on families until I experienced it personally. My sense of hope, ability to find happiness, relate, maintain a job, friendships and relationships were all deeply affected when my family was inundated with the daily chaos of “rare”.

I’m Roberta Smith, President of Alagille Syndrome Alliance (ALGSA) and mom to 14-year-old twin daughters, Cloe and Claudia. This is my journey as a mother of a rare child.

I was 26 years old when I strapped in for the rare disease ride and my life would forever be changed.

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Photo courtesy of Andrea Mosley-Budrow

Since she was born, Cloe has battled the rare disease Alagille Syndrome (ALGS). This syndrome can affect multiple organ systems including liver, heart, and kidneys, as well as, the skeletal and vascular systems. ALGS is completely unique to everyone who has it. Varying degrees of severity and involvement make ALGS a very complex rare disease to understand, treat, and research.

With more than 7,000 rare diseases, stories inside the rare disease community, like mine, all have similar threads. Sharing stories builds awareness and shines a light on the difficult day to day struggles our families endure. Stresses like maintaining employment, divorce, financial strain, medical challenges make life stressful. These all contribute to feeling alone and can result in very heavy feelings of guilt and emotional turbulence. In rare we can’t be alone. Rare needs to be inclusion.

The first 100 hours of our journey was filled with fear, confusion, and upset. Being told Cloe’s liver enzymes were very indicative of “liver disease”, we struggled to grasp the depth of that term. During the initial few days we traveled to a big hospital, hours from home. We didn’t realize we would be there for many days. Overwhelming was the testing, constant lab draws, and the continual swarming of medical professionals from different specialties. We tried to grasp what each one’s part played in the liver disease diagnosis. Fatigue became our normal state. Emotions ran high. Financial worries continued to rise as we learned about different organ involvement and increased medical issues. Like starting a big puzzle, we had no idea what the overall picture would be and we were scared.

It was a storm of complete and utter anguish. A confusion of chaos and frenzy that came with no warning. We learned quickly that appointments, travel, and hospital stays were going to be commonplace.

Getting home after the first inpatient stay didn’t allow for rest. Cloe’s appointment schedule became erratic and daunting. The road to diagnosis proved to be extremely difficult. We didn’t understand what being our own advocate meant and as a result endured extraordinary and unnecessary inconveniences like traveling far for simple imaging and attending separate appointments with specialists that could have been combined. We learned over time and with experience how to navigate the issues, but each contributed to the overwhelming nature of the situation.

After a whirlwind 2 months, Cloe had a diagnosis. We didn’t know it at the time but an introduction to a rare disease like Alagille Syndrome was something many families never get and a diagnosis at 2 months was faster than most. Along with that, when a rare disease is identified, it’s usually unheard of by most medical professionals and individuals.

The stress of a horribly busy medical schedule lead to my resignation at work and our lives became entrenched with activities surrounding Cloe’s Alagille Syndrome. As her medical involvement unfolded, we became very aware that this was a diagnosis filled with complexity and uncertainty. Learning everything about it became my mission and being invested in every appointment was important to me.

Through Cloe’s testing I learned about Nuclear Medicine. While holding Cloe still during a scan, a kind technologist taught me why this imaging was important. Our conversation turned to schooling and eventually a career path opportunity presented itself. That evening after I laid the kids down I applied to the only university in Michigan who had a Nuclear Medicine program. I formulated a long-term goal I could latch onto and hoped it would help alleviate the financial situation we found ourselves in since ALGS came into our lives. With a 3-year wait list, I figured I’d know just how severe Cloe’s ALGS was and prayed the dust would settle by the time the program opened up for me. I needed something to focus on. I didn’t want to get swallowed up in the grief of the situation.

Tensions at home increased, as did the strain of home medical care responsibilities. Cloe’s failure to thrive became a big obstacle resulting in NG-tube placement with midnight feedings on a pump, a care plan I learned to execute myself. Placing the NG-tube was difficult. Pushing the tube into Cloe’s nose, checking for placement with a stethoscope, measuring the feeds, pump speeds and settings … it was a whole new world and one that I took seriously.

Unfortunately, as Cloe’s health declined, the relationship between their dad and I also suffered. Shortly after the twins’ first birthday, we separated and ended a long-term relationship that would continue to waver on and off due to the extreme responsibility that came with our rare disease journey.

An opportunity to start into the Nuclear Medicine program at Ferris State University came earlier than expected. I moved closer to family and, with my sister’s help, was able to attend classes and work through a challenging degree during some of the most difficult medical times for our family.

I took my final exams at my daughters’ bedside during a 14-day hospital stay. Recognized by my peers and professors for fighting through significant adversity to achieve my degree, I was awarded the FSU Maria Gordoba Award. Adversity is what every family endures when dealing with a rare or undiagnosed disease and with adversity blossoms growth, knowledge, and opportunity. Maintaining a positive attitude helped push me forward, holding close the one-day-at-a-time motto.

Alagille Syndrome has without a doubt been a life altering challenge, but I feel it’s led my family on a path we were meant to be on. The gifts I’ve taken away from this experience are humbling. Working through the Alagille Syndrome Alliance to bring hope to other families and contribute to solutions that could have helped my family are so important to me.

Today my daughter with ALGS is thriving. Involved in a clinical trial and currently medically stable, Cloe is an amazing girl. Our family advocates and engages deeply in the success of our ALGS community fighting for better treatments and a cure for Alagille Syndrome. Finding the silver lining through the darkness, a real challenge, has allowed us to help others. Alagille Syndrome is a rare disease. It’s complex, unpredictable, and difficult to navigate and it’s something I thought would destroy my family. What started as a journey alone has turned into a journey with a beautiful community all working to make the world of rare disease less isolating.

Rare should not mean alone. It should not mean scared, financially broke, without employment, or divorced. Rare should mean inclusion. It should mean better treatments, a road to a cure … it should mean together we will get through.

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Western Michigan and Syracuse football programs team up Friday night to shine a spotlight on Rare Disease Community in 2018 opener


RDAG 18 GRAPHICUplifting Athletes is proud to announce that the Western Michigan and Syracuse football programs have joined forces for their upcoming 2018 season opener to shine a spotlight on the Rare Disease Community.

The chapter leaders from each school, with the support of both universities, worked together to make the match-up between the Broncos and Orange on Friday, August 31 at Waldo Stadium an Uplifting Athletes Rare Disease Awareness Game.

Players from each team will wear Uplifting Athletes stickers on their helmets to support Uplifting Athletes and the Rare Disease Community. During the third time-out in the first quarter, rare disease patients will be the honored on the field in recognition of the two programs coming together to support one cause.

14-year old rare disease patient Chloe Hunt from Alagille Syndrome Alliance, along with her mother and twin sister, will join the teams on the field.

The Western Michigan chapter leaders were inspired by Syracuse Chapter President and offensive lineman Sam Heckel’s rare disease journey and the courage shown by Orange quarterback Sam Culpepper during his recent cancer battle.

Thank you to the athletic departments at Western Michigan and Syracuse for supporting the football student-athlete leaders of each chapter by allowing them to recognize the Rare Disease Community as part of this game.

 

Notre Dame chapter holds Uplifting Experience event for rare disease patient families


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An important part of the heritage of our Notre Dame Chapter is a bowling event they began in 2014. The event was the main fundraiser instead of a Lift For Life event.

Now that the Fighting Irish are able to hold a Lift For Life, the bowling event took on a new and exciting new chapter this year as an Uplifting Experience with the focus squarely on rare disease patients.

Throughout its first four years of the bowling event, a number of rare disease patients were on hand at Strikes & Spares Event Center in Mishawaka, Indiana. The impact those patients had on the Notre Dame football players laid the foundation for this Notre Dame Chapter event to become an Uplifting Experience.

More than 50 people signed up including rare disease patients, parents, caregivers and siblings. They all enjoyed two hours on the lanes with more than 20 members of the 2018 Notre Dame football team.

“Thanks again for inviting us to the bowling event. Both of our boys had so much fun,” one parent said. “When we left, (our son’s) little brother said, ‘I play ball with the big boys’. We really enjoyed it and are so grateful to be a part of this type of community.”

The event was free of charge and was opened up to any and all rare disease patients and their families in the South Bend area.

“It was great to see how happy the kids were and how great the players were with the kids,” said Uplifting Athletes Director Rare Disease Engagement Rob Long, who attended the event. “A bowling event like this a perfect Uplifting Experience and benefits everybody involved.”

The Uplifting Athletes program initiative, Uplifting Experiences, aims to bring the Rare Disease Community closer to our network of college football student-athlete chapter members by providing unique opportunities to rare disease patients and their families.

“We are uniquely positioned to provide these opportunities to rare disease patients and their families and we are excited that it was the Notre Dame chapter that helped get this program off the ground,” Long said. “It’s a extension of our chapter network using its platform to directly reach out and interact with the Rare Disease Community we all support.”