CSCF observes World Sickle Cell Day

STATEWIDE SUPPORT--Public officials and supporters from all over Pennsylvania gathered with the Children's Sickle Cell Foundation Inc. in Harrisburg, at the State Capitol, for Pennsylvania Sickle Cell Advocacy Day on June 16. (Photo courtesy of state Rep. Ed Gainey)
STATEWIDE SUPPORT–Public officials and supporters from all over Pennsylvania gathered with the Children’s Sickle Cell Foundation Inc. in Harrisburg, at the State Capitol, for Pennsylvania Sickle Cell Advocacy Day on June 16. (Photo courtesy of state Rep. Ed Gainey)
Taking one day out to recognize and bring awareness to the thousands in the U.S. and the millions in the world who are “living well” with the debilitating blood disease known as Sickle Cell Anemia, all while remembering those who have lost the battle and who continue to fight for a cure, is what Children’s Sickle Cell Foundation Inc. Executive Director Andrea Williams says June 19, World Sickle Cell Awareness Day is all about.

In honor of the globally recognized annual celebration, the organization that prides itself on being the only organization in the Pittsburgh area that is committed to serving children with Sickle Cell and their families, held several events leading up to the day.
Williams, who founded the organization after her son was diagnosed with the disease and found that resources were far too few, posted on Facebook, “…We speak life to those who live with Sickle Cell and to those who provide care for them, those who dedicate their lives to research to find a universal cure.” She later wrote that, to her, World Sickle Cell Day means “that we do what we can here in the U.S. for (the) 90-100,000 like our children (who are living with the disease) because there are millions depending on us to make a global difference. I get so many letters and emails and my heart breaks because I can’t do something tangible in our lives. WCSD means I choose to look beyond what happened to me and focus on the global need to cure the disease.”
WSCD, according to Williams, was established June 19, 2009, by the World Health Organization, by resolution, at the United Nations in New York.
To kick-off WSCD, not to be confused with National Sickle Cell Awareness Month which takes place in September, CSCF held its annual Walk on June 14 at Kennywood Park. Nine teams and a host of individuals walked around the amusement park to raise funds for the organization, and for the first time, used online fundraising to accept donations. Williams deemed it successful. The top teams to raise funds were Hogan’s Heroes with $1,120, followed by an UPMC team with $650 and St. Paul Baptist Church with $320.
“It was really good. I get excited when I think about what God has blessed us with; to do things in a way that can benefit others.”
Following the Walk, CSCF and supporters from across the state gathered in Harrisburg on June 16 for the Pennsylvania Advocacy Day; the theme “PA Supports Sickle Cell Disease.” Those living with the disease, along with family members and other supporters gathered at the state capitol building to not only make legislators aware of the issues surrounding Sickle Cell Disease, but to also thank them for their continued support, especially of the Hydroxyurea Health Education, Awareness and Access Initiative. Through the initiative, approximately 20 percent more individuals suffering from the disease have been able to access Hydroxyurea, the only FDA approved disease modifying drug therapy for the disease; therefore decreasing the number of pain crisis and acute chest syndrome episodes, hospital stays and healthcare needs.
The organization also asked that the initiative continue to be a line item in the state’s budget.
Williams said the day’s event and supporters’ attendance was all made possible by American Eagle Outfitters who donated $1,000. She said their generous donation provided food and transportation for approximately 75 people from across the state.
The week of events ended with an Applebee’s Dining to Donate fundraiser on June 18 at the Edgewood location. When individuals dined at the specific location and presented the special coupon, 15 percent of their total bill was donated to CSCF for their annual Back to School Bash which will take place August 22. The Bash provides backpacks and school supplies to students with Sickle Cell and their siblings.
Williams said the event is “to make sure students are prepared for a successful school year.”
This was the first year that the fundraiser was held at the Edgewood location which was more accessible to CSCF’s families. Last year the event was held at a Robinson location.

Birney Smith
Birney Smith

While WSCD brings awareness to the disease, it also recognizes those “living well with Sickle Cell,” as CSCF’s motto states. One individual Williams feels deserves to be recognized is 86-year-old retired United States Postal Service employee Birney Smith of Pittsburgh. Smith, who was diagnosed with Sickle Cell in the 1950s after experiencing unexplained pain and taking a blood test which detected the disease, is one of the oldest individuals living with the disease. According to Williams, the average life expectancy for women is age 45 and age 47 for men.
“When you have someone who has lived so long for decades past the time expected that’s incredible, and it’s an inspiration to me as a mom. When I see him, I say, “he did this without the benefits of penicillin, without the benefits of Hydroxyurea; he’s done this without modern medicine and by the Grace of God,’” said Williams. “I look at him and I know he’s here to remind that Sickle Cell Disease, yes, it is horrible, debilitating and sometimes even fatal, but there’s hope. For families, it means that we can live and for those persons who have been told that ‘you’re going to be dead before 21, before you’re 25,’ that blows that myth out the water.”
Although it’s painful at times, Smith said he does not let Sickle Cell stop him from living the fullest life he can. He watches what he eats, staying away from fried foods, and said the best advice he can give is to “keep up your faith in your eternal maker, creator; He controls everything. Keep the best of intentions and the golden rule is to treat other people the way you’d want to be treated.”
Smith’s daughter, Patty Smith, said her father is an inspiration and that her family is blessed to have him. “Him being a living example of how we should live our lives, I think, has been the most important thing for me. It shows me that no matter what, you just got to keep your faith, keep believing and just keep on keepin’ on, and in the end it’s going to be alright.”
While CSCF does observe WSCD, June is not the only month that the organization works to spread awareness of Sickle Cell Disease. Year-round CSCF hosts Lunch and Learn sessions for corporations interested in educating their employees. Williams said it’s an opportunity to increase awareness; keep employees healthier and connected, especially if they have a child or know someone living with Sickle Cell; and it dispels the myth that the disease only affects African Americans. Thus far, CSCF has conducted sessions for BNYMellon and ALCOA. Williams always welcomes interested corporations to contact her.
Also, for the first time, CSCF will host the 2015 Swing for Sickle Cell Celebrity Golf Outing featuring former All-Pro Steelers Wide Receiver Louis Lipps as the honorary chairperson on Sept. 14. The event will include brunch, golfing, a cocktail reception and dinner.
“It’s incredible to think people would come out of the woodwork to do the things they do,” Williams said of Lipps, who wanted to get involved because of his two relatives living with Sickle Cell.
Registration and sponsorship opportunities for the event are now available. For more information or to sign-up, individuals can call 412-488-2723 or visit www.cscfkids.org.

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