Ryan Clark's Cure League: Tackling Sickle Cell

Ryan Clark to give keynote address at NBCSL symposium

Kristen Bagwell — Fri, 17 May 2013 13:57:03 +0000

The National Black Caucus of State Legislators (NBCSL) has invited Ryan Clark to be a keynote speaker at their 8th Annual Promoting Healthy Lifestyles Symposium on June 7, 2013, in San Francisco, CA. The purpose of this symposium is for legislators from across the nation to exchange ideas about health issues affecting the African American community. As this year's theme is "Building a Healthy Community," Ryan will have an opportunity to share with these state lawmakers his personal story, and about the work he is doing raise awareness about sickle cell anemia and its effects on those who live with this disease.

A Night with Ryan Clark

Kristen Bagwell — Thu, 16 May 2013 13:17:29 +0000

Ryan is looking forward to spending some time with SCD patients and families next Tuesday evening! Though this will be a private event for patients, we'll be sure to post some photos!

Are you a Sickle Cell Trait (SCT) Carrier?

kelsey — Tue, 08 Jan 2013 19:54:57 +0000

Do you play college football? Do you know that you carry SCT?

If you answered yes to both of these questions you may be eligible to participate in an important research study!

The goal of this study is to determine how the genes that surround the SCT gene may affect the health of those who carry SCT.

Total participation time will be approximately 15 to 30 minutes.

There will be no monetary compensation for participation in this study.

If you would like more information about this study please contact the Principal Investigator, Carroll Flansburg, at 802-585-1054 or cflansbu@mail.usf.edu.

Check out our Facebook page at: http://www.facebook.com/pages/Carriers- of-Sickle-Cell-Trait/150929204998069.

Ryan Clark Named Steelers 2012 Walter Payton Man of the Year

kelsey — Fri, 07 Dec 2012 18:51:18 +0000

Ryan Clark is having one of the best seasons of his NFL career, but it is his off-the-field performance giving back to the community that sets him apart. For his efforts, Clark has been named the Steelers 2012 Walter Payton Man of the Year.

Clark will be one of 32 NFL teams' Man of the Year winners who qualifies for the league's national 2012 Walter Payton Man of the Year award. The award recognizes a player's off-the-field community service as well his playing excellence. The overall winner will be announced during Super Bowl XLVII week in Indianapolis.

When Clark was dealt a life-threatening blow, he turned adversity into an opportunity to make a difference.

In 2007, after playing in Denver's high altitude, Clark, who has a combination of the sickle cell trait and an underlying medical condition, became ill. The strong, otherwise healthy, 205-pound safety experienced severe pain in his left side and was rushed to a Denver hospital. The high altitude and physical stress from the game caused Sickle Cell-related damage to his spleen. Upon returning to Pittsburgh he underwent emergency surgery to have his spleen and gall bladder removed, ending his season. His courageous return to football earned him the 2008 Steelers Ed Block Courage Award.

He and his wife, Yonka, have also dealt with the heartache of Sickle Cell beyond the football field. Ryan’s sister-in-law died from complications of the disease in 2009 at age 27 and one of his children carries the Sickle Cell trait. This personal history motivated one of the NFL's most outspoken players to take a stand. Ryan teamed up with the University of Pittsburgh and UPMC to create Ryan Clark's Cure League. "I didn't just want to lend my name to a cause. I wanted to get involved in a big way," he said. The Cure League raises money for Sickle Cell research, clinical care, and increases awareness about this painful, life-threatening disease.

Ryan's commitment to community doesn’t stop with Sickle Cell. He is the local spokesman for Dairy Management's Fuel Up to Play 60 program, which encourages kids to adopt healthy nutrition, especially low-fat dairy, as part of their Play 60 activities.

For the past two years he has visited the local Play 60 Super School, speaking to students about the importance of being physically active for 60 minutes daily and leading them in fun gym activities.

Clark has also been involved with numerous charities including Central Blood Bank, American Heart Association Walk, the Cancer Caring Center Walk and Salvation Army's Project Bundle-Up. The entire Clark family appears each year in the team's fashion show, which benefits the UPMC Starzl Transplantation Institute, UPMC Sports Medicine Concussion Program and the Cancer Caring Center.

Clark originally signed with the New York Giants as an undrafted rookie free agent from LSU in 2002. He spent two seasons with the Washington Redskins before being signed by the Steelers as an unrestricted free agent in 2006. He won his first career Super Bowl as the starting safety in Super Bowl XLIII. He was selected as the Steelers' 2008 winner of the "Chief Award," chosen annually by the Pittsburgh chapter of the Pro Football Writers of America.

Join Steelers Players at Cleats for the Cure

kelsey — Wed, 21 Nov 2012 14:29:44 +0000

Paint the town red…black, gold, any color, with Safety Ryan Clark and other Steelers players on Monday, December 10, 2012 for a charity auction to benefit Ryan's Cure League.

Organized by 93.7 FM The Fan, this unique fundraiser will feature Ryan and several of his teammates showcasing their cleats, many of them game worn, which have been painted by local artists and autographed by the players.

The event takes place at Engine House 25 (itself a unique and amazing venue), 3339 Penn Avenue, Lawrenceville. The one-of-a-kind cleats will be auctioned off that night, along with gift baskets and other prizes.

Tickets are $100, and include food, drink, music, dancing -- and mingling with Steelers. (Must be 18 or over to attend.) Tickets available at http://www.showclix.com/event/cleatsforacure

Attire is business casual. For additional information, call 412-353-1117. No personal merchandise for autographs will be permitted at the event.

Steelers vs. Saints Challenge

kelsey — Wed, 21 Nov 2012 14:28:45 +0000

Congratulations to the students of Vandebilt Catholic High School, Houma, Louisiana, for an amazing fundraiser that netted more than $1,100 for Ryan Clark's Cure League and the Steve Gleason ALS house in New Orleans.

The "Steelers vs. Saints" challenge brought supporters of both the Pittsburgh Steelers and New Orleans Saints together for a different type of competition.

Vandebilt band teacher, Brad Adams, who grew up in Ellwood City (and remains a devoted Steelers fans) helped the students to organize the fundraiser, in which students, teachers, staff and parents donated coins and bills to their favorite 'team'. A total of $1,137.76 was raised, with each organization receiving $568.88.

The funds for the Cure League will support sickle cell research. Team Gleason funds will help to build a house in New Orleans for ALS patients and their families to stay at while receiving medical treatment.

This is one competition in which EVERYONE came out a winner!!

PA House of Representatives Honors Ryan Clark

julia — Tue, 02 Oct 2012 20:26:30 +0000

HARRISBURG, Oct. 2 – The Pennsylvania House of Representatives unanimously adopted H.R. 867, introduced by State Rep. Harry Readshaw, D-Allegheny, which recognizes the contributions of Pittsburgh Steeler safety Ryan Clark in the fight against sickle cell anemia.

Sickle cell anemia affects 1 in 500 African-Americans and 1 in 900 Hispanic-Americans, while 1 in 12 African-Americans and 1 in 16 Hispanic-Americans carry the trait in their genes. For those who are affected by this disease, oxygen-carrying red blood cells can become misshapen and have trouble passing through small blood vessels, which can lead to severe pain and organ damage, and even death.

Clark has publicly disclosed how the disease affects him as an athlete. It cost him his spleen and gallbladder and prevents him from playing in high-altitude venues such as Denver.

Clark said in addition to his own illness, his family has suffered loss due to the disease.

"The loss of my sister-in-law and my own life-threatening experience with sickle cell gave me insight into the intense agony people with the disease go through daily. I am proud that the Commonwealth of Pennsylvania is recognizing this today," Clark said.

“I congratulate Ryan Clark for his efforts and wish him success in his effort to find a cure for Sickle cell Anemia,” Readshaw said. “Ryan and his family are my constituents and I am proud to call them friends.”

Clark’s football duties kept him from Harrisburg today, but Readshaw will present a copy of the resolution to him in person in the near future.

CONTACT: Lou Waleff
House Democratic Communications Office
Phone: 717-787-7895
Email: lwaleff@pahouse.net

Cure League News

kelsey — Tue, 02 Oct 2012 13:33:57 +0000

Steelers' Ryan Clark Seeks Sickle Cell Disease Cure
Source: Pittsburgh Post-Gazette
September 5, 2012

Steelers' Ryan Clark, UPMC-Pitt Launch Sickle Cell Initiative
Source: Pittsburgh Steelers at Steelers.com
September 4, 2012

Ryan Clark Won't Play in Denver
Source: ESPN.com
September 4, 2012

Steelers S Ryan Clark Launches “Cure League” to Raise Awareness of Sickle Cell Trait
Source: Associated Press — The Washington Post
September 4, 2012

Ryan Clark Launches Program To Combat Sickle Cell Disease
Source: KDKA-TV
September 4, 2012

Steelers' Ryan Clark, UPMC Launch Sickle Cell Campaign
Source: WPXI.com
September 4, 2012

Ryan Clark’s Cure League Tackles Sickle Cell
Source: WESA-FM — Pittsburgh's NPR News Station
September 4, 2012

Blog Posts About Ryan Clark's Cure League

kelsey — Tue, 02 Oct 2012 13:33:51 +0000

Ryan Clark's Cure League: Eat'n Park's Partner Spotlight of the Month
Source: Eat'n Park Blog
September 5, 2012

Steelers' Ryan Clark Prominent in Sickle Cell Initiative Launch
Source: CBSSports.com
September 4, 2012

Richard Fletcher Uses Martial Arts to Cope with Sickle Cell Disease

SVukmanic — Fri, 24 Aug 2012 18:12:24 +0000

Richard Fletcher participates in martial arts like Wu and Krav Maga to cope with the pain associated with sickle cell disease. One of four children, he lost his sister to sickle cell disease when he was young.

When asked about his earliest memories of dealing with sickle cell disease, Fletcher answered without hesitation:

“I’ve had complications with sickle cell disease all of my life. I’ve been in and out of the hospital for as long as I can remember. Seems like as soon as I got out, something would happen and I’d be back in again.”

Not only did he have pain crises to deal with, Fletcher experienced multiple blackouts and seizures as a child because of sickle cell disease.

“I grew up with so many health problems and visits to the doctor and hospital, but one of the worst things was losing my sister to sickle cell disease. That really hurt,” says Fletcher.

Sickle Cell Disease Can Devastate Educational and Career Pursuits

It’s difficult to hold down a job or complete pursuits for a higher education when trying to deal with the pain and complications of sickle cell disease.

“I had to drop out of college after a year and a half. That put a stop to my goal of graduating college. And it’s difficult to hold down a job when you’re always sick,” observes Fletcher.

Employers who don’t understand what sickle cell is all about often fire employees who miss too much work due to complications of this serious, inherited blood disorder.

“People just don’t understand about sickle cell disease,” laments Fletcher. “If you had cancer and had to miss lots of work because of it, they’d understand, but that’s not the case with sickle cell.”

Hydroxyurea and Exercise — Finding Peace Amidst the Chaos

Fletcher deals with some level of pain on most days, but doesn’t have nearly as many bouts with severe pain since he started taking hydroxyurea. This medication helps control the frequency and intensity of sickle cell pain crises.

“I take my hydroxyurea and I exercise. For exercise, I like to walk, do my Wu and Krav Maga, as well as use my throwing knives. Staying active with martial arts helps me find peace and a place of total calm within myself,” explains Fletcher.

He reports that the exercise and hydroxyurea keep his pain episodes at bay. When he does have intense pain, it doesn’t last as long.

Advice for Those with Sickle Cell Disease

According to Fletcher, growing up in the projects around Pittsburgh, Pa., helped to toughen him up. His family’s perseverance through hardship taught him to be tough as well.

“Keep a strong and happy attitude to get through the painful times. I had times in the hospital when I was hollering and screaming in pain, but there was nothing they could do to help me. It’s the strong attitude and lots of prayer that got me through these times. I’m shocked every single day that I actually wake up. I think God helps me a lot. Keeping the faith along with trying to maintain a positive attitude has saved me this far.”

Fletcher urges people to seek genetic counseling if they have a history of sickle cell disease or sickle cell trait in their families.

“I have a great niece with a child who suffers from sickle cell. The baby is always in the hospital and isn’t doing so well sometimes,” says Fletcher.

Getting tested and seeking medical advice when starting a family may save people from a lot of pain in the future — until scientists find a viable, accessible cure.

Help find a cure for sickle cell disease

By joining Ryan Clark's Cure League, you can help researchers at the University of Pittsburgh’s Vascular Medicine Institute and UPMC discover better treatments and end the suffering caused by sickle cell disease.

“Join my team and help fund research that will find new treatments and, ultimately, a cure for sickle cell disease.” ~Ryan Clark

Donate to Ryan Clark's Cure League today and help us tackle sickle cell disease!