SICKLE CELL ADVOCATES OF THE YEAR AWARDS

Meet the Panel Judges

The Sickle Cell Advocates of the Year Awards judging panel consists of five to seven members: previous Sickle Cell Advocate of the Year Award recipients and fellow advocates in the sickle cell community.

2018 PANEL JUDGES

Devard Darling

 

Devard Darling is a retired 7-year veteran NFL wide receiver.  A native of Nassau, Bahamas, Darling is one of the first Bahamian athletes to play professional football in the United States.

 

He began his athletic career at Florida State University as one of the top high school prospects out of Stephen F. Austin High School in Houston, Texas.  However, after the tragic passing of his identical twin brother Devaughn on the football field during spring practices in 2001, Florida State University would not reinstate Darling for his remaining eligibility. After being connected with Mike Price, former Head Coach of the Washington State University Cougars, Darling was cleared to play and became one of the best wide receivers in WSU history, recording 16 touchdowns and over 1500 yards in just two years.

 

Darling played 4 years with the Baltimore Ravens where he was selected as 82nd overall in the 3rd round of the 2004 NFL Draft.  In the final two months of the 2007 season, Darling recorded 18 receptions for 326 yards and 3 touchdowns in just 8 games.  In 2008, Darling signed a 3-year deal with the Kansas City Chiefs, but was sidelined with knee injuries in the 2009 season.  He continued to pursue his goals on the professional football field with the UFL Omaha Nighthawks in 2010 and then the Houston Texans in 2011, but was again slowed down with knee and hamstring injuries.

 

In 2012, Darling officially retired and now has soley focused on “Changing Peoples Lives.”  In 2006, Darling established the “As One Foundation” in honor of his brother and plans to open a state-of-the-art sports facility in his memory called The Devaughn Darling Sports Complex.  While he continues to bring to life the dream envisioned by he and his brother Devaughn: to bring the game of American football to their native country of the Bahamas; he is now also building a business at Altruista Wealth Management, where as a financial advisor and educator, he has the opportunity to change the lives of his clients by helping them to achieve financial independence.

 

Terry Jackson, PhD

 

Dr. Terry L. Jackson received his B.S. in Biology from Virginia State University in 2003 and his PhD. In Genetics and Genomics from Duke University in 2003. Dr. Jackson has the sickle SS genotype and as a child he was the first poster child for sickle cell for the state of Virginia. He conducted research on sickle cell disease in the lab of Dr. Marilyn Telen at Duke University Medical Center and served on the Board of Directors for its sickle cell advocacy group, The Bridges Pointe Foundation. for Currently, Dr. Jackson lives and works in the San Francisco Bay area where he continues to be a strong champion and advocate for the patient population of sickle cell disease.

 

Lisa Rose, MEd

 

Lisa Rose is the Executive Director of HOPE for SCD, an organization focused solely on providing research based medical education around Sickle Cell Disease, and areas of complimentary interest. She has a Master's Degree in Education and has been developing curricula and trainings for a myriad of companies for over 11 years. Her collaborating efforts include research studies spanning both medical and educational settings. Her current focus is on Adult Education, and the gaps related, within the medical field for patients and families.

 

Lisa has also authored a book for newly diagnosed families entitled, “Sickle What?”, which breaks down intense medical topics into Adult Learner friendly modules. Although her work with HOPE for SCD has reached international audiences, she continues to push national hospitals and organizations to focus on presenting educational materials in a way that meets the needs of the audience, while ensuring all necessary information is conveyed. Her daughter Sophia has SCD, and will always be the motivation for Lisa to continue her work within the community.

Arafa Salim Said

2017 International SCAY Award Recipient

 

Arafa is the embodiment of a true sickle cell advocate.  As founder of the Sickle Cell Disease Patients Community of Tanzania, who's mission is "To advocate for and enhance the ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for the people with sickle cell disease," Arafa has invested over 7 years on heavily crusading against the misinterpretation and misinformation surrounding the disease.

 

Under her leadership, the Sickle Cell Disease Patients Community of Tanzania has organized fundraising events, hospitals and school visits, charity walks, and blood donation events. You can find Arafa across educating and supporting the sickle cell community across various social media platforms participating and engaging sickle cell community members in Q&A and group sessions on Instagram, Twitter, Facebook, and WhatsApp.

 

e. Smalls

 

an artist, advocate, + abolitionist working to improve the visibility + representation of coloreds + queers and fighting for the improved quality of life + liberation of all oppressed peoples, with a spotlight on Black mental health, OCD, chronic illness, + invisible disability.

Jeffrey Zuttah, MBA

 

Jeffrey (Jeff) Zuttah is a business development professional for Quartet Health, a company that uses its technology, data, and care coordination and collaboration platform to drive significant cost reductions and improved outcomes for members with co-morbid physical and behavioral health issues. In addition to his work at Quartet, Jeff is committed to his community.

 

He is a passionate patient advocate for those with Sickle Cell Disease, where, in 2017 he was selected as one of Black Enterprise’s 100 Men of Distinction for his advocacy work. Jeff is also a member of the Robert S. Brookings Society at the Brookings Institution, a nonprofit public policy organization whose mission is to conduct in-depth research that leads to new ideas for solving problems facing society at the local, national and global level. In addition, Jeff is an active member of the Arena, a social welfare organization, building communities that activate the next generation of civic leaders.

 

Jeff began his career in New York City as an analyst in Morgan Stanley's Investment Banking Division before moving to Washington D.C. and serving as a Policy Advisor for the Obama Administration’s Treasury Department. As a Policy Advisor, Jeff analyzed and structured Treasury's investments in and support for the financial sector and advised senior Treasury officials on issues related to financial stability. Following his time at Treasury, Jeff joined the Carlyle Group where he was a Private Equity Associate in the firm's U.S. Equity Opportunity Fund. Jeff graduated with a B.A. in Public Policy from Stanford University and received his M.B.A. from Harvard Business School with honors.

 

2017 PANEL JUDGES

Rae Blaylark

 

Rae Blaylark is Executive Director of Sickle Cell Foundation of Minnesota. Since 2004, she has served alongside her community advocating for equitable resources, quality of care and patient rights for sickle cell patients in the state of Minnesota. In 2015, Rae founded the organization in response to a community outcry for an community-based sickle cell organization created For Us, By Us. The Foundation serves to fulfill it’s mission by streamlining her work with people, providers, and community resources.

 

Over the years Rae has worked as Sickle Cell Services Coordinator for Children’s Hospitals of MN and in Training & Education, Donor Recruitment, and Community Engagement for Memorial Blood Centers’ Sickle Cell Program. Rae has tirelessly served as patient/caregiver advocate, curriculum coordinator, trainer, program developer, grant writer, community planner, program evaluator and community liaison for her community and the organization. Rae’s fight for sickle cell warriors and their families, is personal, she has a 21 year old son who also battles sickle cell disease. She is motivated by her passion, the mission and her call. Her person-al mission is summed up in the following statement: “We fight for equitable re-sources, better health care practices and more research for individuals living with sickle cell disease. This isn’t just my passion, this is my life...this is OUR life!”

Jew-EL Darbone

 

Jew-EL Darbone is one of the founders of #Boldlipsforsicklecell and its CFO. She is a social media maven and sickle cell advocacy and empowerment is her passion. A graduate of Mount Tabor High School in Winston Salem NC she doesn't allow any obstacle to stop her from living life to the fullest.

 

Marie Ojiambo, PharmD

 

Trained at St John’s University, College of Pharmacy and Health Sciences in New York, Marie Ojiambo is a Formulation Scientist by profession specializing in drug research and development. She is also a Sickle Cell warrior and a global advocate. Diagnosed at the age of 1, Marie her knowledge and to raise awareness about sickle cell disease (SCD).

 

Currently consulting with Pfizer Inc. and SCDAA, Ojiambo uses her experiences to inform researchers, advocates and various stakeholders within the SCD space on strategies to advance the healthcare and treatment options available to sickle cell warriors.

 

In 2013, Marie founded the Sickle Strong Initiative, a Kenyan based NGO whose mandate is to raise awareness around SCD and to advocate for better health care opportunities for patients in Kenya. Through SSI, she has been able to host medical training and awareness campaigns for patients in Kenya. Marie is also the proprietor of the annual sickle cell public awareness forum, Ongea (‘speak out!’ in Swahili). This annual summit that takes place every June in Kenya to commemorate World Sickle Cell Day, and provides a platform for sickle cell warriors to speak out about their condition, and interact with each other.

Allan Platt, PA-C, MMSc

2015 U.S. SCAY Award Recipient

 

Allan Platt, PA-C graduated with a BS in Health Systems Engineering from the Georgia Institute of Technology  in 1977, a BS in Medical Science from the Emory University School of Medicine, Physician Assistant program in 1979, and a Masters of Medical Science in Career Physician Assistant from Emory in 2006.  From 1984 until 2004 he was Program Coordinator, and Physician Assistant at the Georgia Comprehensive Sickle Cell Center at Grady Health System. This is the world's first dedicated 24 hour emergency center for sickle cell patients. The Center is one of the largest in the world, currently providing primary and emergency care for 1700 sickle cell patients. The center won AAPA Innovations in Health Care winners in 2000. He is the web designer since 1997 of The Sickle Cell Information Center at www.SCInfo.org. Allan has co-authored a patient guide book on sickle cell disease and trait for the general public titled Hope and Destiny, a Patient and Parents guide to Sickle Cell Disease distributed by Hilton Publishing in 2002, 2006, 2011, and its fourth edition in 2016. He is the editor of the monthly sickle cell e-newsletter that reaches over 5,000 people worldwide.

 

He is co-author of Overcoming Pain from Hilton Publishing published in September 2006 and author of Evidence Based Medicine for PDAs: A Guide for Practice Published by Bartlett and Jones March 2008.

 

In 2002 Allan received the, Paragon Teacher of the Year Award from the AAPA, and the SAAPA Presidents award in May 2007. He is currently an academic coordinator and director of admissions at the Emory University School of Medicine Physician Assistant Program. He is author of the e-Connections feature in the AAPA publication PAprofessional and was the Technology in Education feature editor for the Journal of Physician Assistant Education until 2013.

Adrienne Shapiro

 

Adrienne is a fourth generation of mothers in her family to have a child born with Sickle Cell Disease.

 

She was one of the first supporters of the work done by Dr. Kohn in bone marrow and later stem cell transplants. As a true believer that science would cure Sickle Cell Disease, she has dedicated a large portion of her life to improving the lives and overall healthcare of those living with the disease. In the past three years she has found her voice as a Stem Cell Activist. Speaking in support of the funding for medical trails thru CIRM, her experience includes attending educational conferences and seminars, as well as meeting with Southern California Congress members to lobby for the support and passage of the Sickle Cell Education Act.

Ashiraf Ssebandeke

2015 International SCAY Award Recipient

 

Co-Founder and head of Action Against Sickle Cell Disease an organization dedicated to improving the healthcare of people living with sickle cell disease. It prioritizes a world without sickle cell disease through new born screening and screening youths of their genotype. Action Against Sickle Cell Disease started a clinic in March 2017 and has so far registered over 300 patients receiving free treatment and free sickle cell screening services to youth and adults.

 

Ashiraf refers to himself as a healthivist for my sickle cell disease advocacy that date back to 2004 when he was in high school.  He is also a social media activist who pioneered the use of social media sphere to raise awareness about sickle cell disease in Uganda in 2010.

 

He is the country representative and Kampala correspondent for African Sickle Cell News and World Report based in Nigeria that is dedicated to sickle cell issues.

2016 PANEL JUDGES

Jennifer Concepcion

 

Mother of a child with Sickle Cell Disease | Bronx, NY | 2014 SCAY Award Recipient

 

From the moment Jennifer Concepcion found out her daughter, Delilah, would have Sickle Cell Disease she began educating herself and others about the disease. When her daughter had her first sickle cell pain episode, she shared it with the world, not knowing the type of impact it would create. Jennifer was able to expose the ugly realities of Sickle Cell Disease, while capturing the hearts of thousands of viewers. In doing so she has risen (and still continues to raise) an immense amount of sickle cell awareness.

 

She was recognized for her efforts in advocating for the White House Petition - H.R. 1807 Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2015, which aimed to open 25 vital sickle cell centers across the nation. Jennifer worked tirelessly to promote the petition and gave it the much needed boost by sharing Delilah's experience with the disease. While promoting for it, Delilah's story went viral and managed to grab the attention of Khloe Kardashian, Alex Elle, and other public figures. These public figures proceeded in sharing the petition with their followings and helped the sickle cell community to achieve the required 100,000 signatures; in fact it exceeded the required amount by an extra 24,000 signatures.

 

Jennifer is also active within the sickle cell community and has introduced it into the Latinx community. Every year she encourages friends and family to healp spread awareness by joining them at the annual SCTPN Sickle Cell Walk. In 2015, Lilah's team (known as #TeamLilah) managed to raise almost $1000 in donations towards SCTPN.

 

She has also hosted fundraisers and support groups for moms with children with sickle cell. She is actively educating others about the disease, while looking for ways to put sickle cell on the map.

 

Angela Ehrlich

 

Mother of children with Sickle Cell Disease | San Ramon, CA | Board - SC101

 

Angela's passion for sickle cell advocacy and education stems from her being a mother of five– two with sickle cell disease and two with sickle cell trait.

 

She is currently a principal at Lincoln Elementary School in Newark, California. Being an educator has given her an immense amount of experience on how to educate others about sickle cell. Angela has also done sickle cell counseling, with the Hemoglobinopathy Program at the University of Iowa hospital and clinic.

 

Angela has a M.A. in Educational Leadership and Administration from Iowa State University, and a M.A. in Guidance Counseling/ Human growth & Development from the University of Iowa. Angela also serves on the board of Sickle Cell 101, and is and active member of the team.

Pam Moore

 

Individual living with Sickle Cell Disease | Baltimore, MD | YouTube Vlogger

 

Pam Moore is a 32 year old living with Sickle Cell Disease. She learned early on in life that sickle cell was a disease that required much more worldwide attention and support than it receives. In an effort to improve the obstacles that people with sickle cell face, she has become an activist by lobbying every year, remaining active in support groups.  Pam earned her Bachelor's degree in Business Administration from Bowie State University and currently works as a Grants Manager with Johns Hopkins University. She resides in her hometown, Baltimore, Maryland and has a 3 year old daughter, Hope.

 

In addition, Pam is a sickle cell vlogger, creating her own Youtube channel to promote education and raise awareness. Topics of her videos range from sharing her pregnancy experience to her experience with Avascular Necrosis (AVN) and her hip replacement.

 

To check out her YouTube Channel click here, or visit her YouTube page at: www.youtube.com/user/LifewithoutSCA

Hertz Nazaire

 

Individual living with Sickle Cell Disease | Bridgeport, CT | Award-Winning Artist

 

Hertz Nazaire was born in Port-Au-Prince, Haiti on October 2, 1973 where he was raised by friends and family of his mother Yverose Nazaire who had left Haiti to find work in the United States.  Nazaire later moved to Brooklyn, New York, to live with his mother at the age of 9.  Moving soon after with his new family to Bridgeport Connecticut after she was married.

 

Nazaire never forgot Haiti, drawing his love of color from memories of Tap Taps seen on the streets of Port-Au-Prince, Haiti which are colorful trucks and taxis painted with murals of Haitian life and images of religious stories, the Tap Tap is the main mode of public transportation in Haiti.  Everyday drawing and creating cards and notes for his mother who enjoyed supporting his ability to draw flowers from the Caribbean island that she often missed.

 

His love for drawing and art was later helped along by his art teachers at Westhill High School in Stamford Connecticut where he spent much of the time enduring long hours after school in the Art Department practicing drawing and painting.  At Westhill he found his talent awarded with many early opportunity for Student Exhibitions, one being part of a student group exhibition at the Whitney Museum of American Art at Champion located downtown Stamford, Connecticut at the time.  This encouraged him to seek more education in the arts at the Art Institute of Fort Lauderdale and the University of Bridgeport.

 

In the studio Nazaire focuses on developing a pattern study of mixing both subtle and iconic imagery elements from two or more cultures into a single canvas.  He calls it “Haitian Superflat” ( ハイチのスーパーフラット )  an exploration of his feelings of lost roots and identity, also emotional struggle to escape social dogmas, labels, nationality, and race to become simply a human being expressing what he feels and sees through his life. This idea becomes the driving force behind a mixture of Haitian and Japanese elements into his paintings.

 

Nazaire’s other focus are on creating design and space on his website dedicated to improving the image of Haiti on the web and providing a new community through the use of a new social network platform where Haitians can share their arts and culture with the world.  Nazaire also continues to work in health advocacy as a speaker for Sickle Cell Disease Pain awareness.  His Sickle Cell Series continues to be a significant feature in medical books and other media publications relating to the subjects of Sickle Cell Disease or Chronic Pain.

 

While Nazaire struggles with the pain and challenges of Sickle Cell Disease which has cause his vision to fail over the years the frustration of slowly going blind has encourage him to appreciate the process of painting with a deeper purpose.  His current series of paintings deals with themes and images of the Earthquake in Haiti and life that comes after such a tragic event.

 

Support Hertz Nazaire's latest project on Patreon: http://www.patreon.com/nazaire

 

Call-to-Action: Hertz Nazaire is currently calling for sickle cell warrior photos from around the world.The photos will be used as part of a new Awareness Art called "The Tapestry of Pain". You can email photos digitally to: nazaire@gmail.com or use the following mailing address:

 

Hertz Nazaire

1042 Broad Street #407

Bridgeport, CT 06604 USA

Keith Quirolo, MD

 

Sickle Cell and Thalassemia Expert Physician | Oakland, CA | Ask Dr. Q - SC101

 

Dr. Quirolo is an expert in sickle cell disease and thalassemia who was formally the Director of the Pediatric Sickle Cell Program and the Apheresis Program at UCSF Benioff’s Children’s Hospital Oakland. He in responsible for the content provided for

Ask Dr. Q, a service provided by Sickle Cell 101 as a means of providing the valuable information to inquiring sickle cell patients and those directly affected by the disorder.

 

Dr. Quirolo of a native of California who was born in Oakland and graduated from Castlemont High School.  He enlisted in the US Coast Guard after high school and served as a lighthouse keeper in Alaska and at a lifeboat station on the coast of Maine.

 

He became interested in medicine working on a psychiatric unit at Maine Medical Center.  He supported himself through undergraduate collage as a nursing assistant and following a degree in biology went to nursing school at UCSF San Francisco. Later he worked as a hematology-oncology nurse in the City, which inspired him to continue his education in medicine.  He went to Case Western Reserve School of medicine and supported himself as a nurse working at Rainbow Babies and Children’s Hospital in Cleveland (also supported by his wife who is also a nurse).

 

Following medical school he completed a pediatric residency at Children’s Hospital Oakland and joined a pediatric practice in Berkeley.  Continuing to have a desire to care for children outside of his practice, he worked in the urgent care center at Children’s Hospital.  After about ten years of pediatric practice he joined the hematology department at what is now UCSF Benioff’s Children’s Hospital in Oakland.  Initially he was the pediatrician for sickle cell and thalassemia patients eventually becoming the director of the pediatric sickle cell program.  With a desire

to provide red cell exchange for patients with sickle cell disease he started the apheresis program at the hospital which expanded to become an apheresis unit providing all types of apheresis therapy.

 

Dr. Quirolo wishes to thank all of the sickle cell parents and their children who let him into their lives to care for them.  His twenty years of caring for children with sickle cell disease are the most memorable of his life.  He feels he learned so much about life and living from his patients and their families.  He will hold them in his heart always.

 

Among other projects, he now works with Assemblyman Tony Thurmond and others who want to improve the care for people with sickle cell disease in California.