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Who is S.C.A.R.E.?
S.C.A.R.E., Inc. was founded in September of 1994 by Deborah and Ivor
Pannell, a husband and wife team who are based in the Bronx, NY.They
founded S.C.A.R.E. out of their frustration at problems Ivor was facing as an
adult sickle cell defier as well as difficulties they encountered together as a
patient/care partner team.
The motto of the organization, "Turning Fear Into Action,"
reflects philosophy of advocacy and activism in the face of the overwhelming
obstacles and emotional challenges that are a part of living with a serious,
chronic disease that is under-funded, undervalued and the target of much
ignorance and prejudice. From the earliest meetings, the pair have
discouraged empty complaints without the suggestion of a solution to
whatever problems are on the table.
As participation has slowly grown throughout the NY Tri-State area, as well
as other metropolitan centers in the Northeast, the group has focused its
efforts on developing advocacy skills amongst its participants, who include
sickle cell defiers, their spouses, siblings, children and parents, as well as a
number of medical and other healthcare professionals presently working in the
field of sickle cell disease. We refer to these participants as advocates, a term we use to connote individuals working within the administrative cadre of S.C.A.R.E. for the benefit of the sickle cell community. Some of our advocates are: Dina Terry (who was instrumental in the early 70's in developing the first sickle cell parents' support group in Brooklyn, NY), the mother of an adult son with sickle cell disease who brings over 20 years of experience in public relations, business administration and financial management to S.C.A.R.E.; Taeshia Martin, a young woman with sickle cell disease from the Bronx, NY studying pre-law, Victor Baskerville, a sickle cell defier of Ethiopian heritage living in New Rochelle in Westchester County, NY, currently a student of African Studies and Public Administration; Nathaniel Ayeke, an insurance broker and sickle cell defier born in Nigeria and currently living in Harlem, NY with his wife and child; Darlene Hoffman, a domestic violence and crisis intervention counselor as well as the mother of a young boy with sickle cell disease named Charlie (our youngest advocate); Tracy Rosette, an Italian-American sickle cell defier and telecom analyst from the Boston, Massacusetts area, her husband, David Rosette (a computer network consultant), and her mother, Elaine Alpizar, an executive assistant; Bobby Lee, laboratory professional and philosopher extraordinaire (one of our oldest and dearest supporters); and Ebele Iloka, also born in Nigeria, a pediatric social worker at Kings County/Downstate Hospitals in Brooklyn, NY.
Currently in development is an advocacy
handbook, which will include detailed instructions and advice on how to deal
with many aspects of the sickle cell experience, such as negotiating an
emergency room visit, establishing a relationship with a pharmacist, properly
addressing hospital grievances and coping with disease related stress in
interpersonal relationships.
In 1997, S.C.A.R.E. assumed the role of official community arm of the
Bronx Comprehensive Sickle Cell Center at Montefiore Medical Center,
under the expert supervision of its Director of Clinical Medicine, Dr.
Lennette J. Benjamin. In addition the organization, represented by
Mr. Pannell, was awarded one of
the six coveted Community Fellowships in Urban Health, endowed by the W.
K. Kellogg Foundation and administered by the Department of Family
Medicine of Montefiore Hospital. S.C.A.R.E.'s activities have included
regular monthly meetings, media appearances on various local and national
television and radio programs, as well as assorted print coverage. Currently,
the organization is also the sole representative of the sickle cell community in
NYFAHC, (New Yorkers For Accessible Health Coverage), a coalition of
voluntary health organizations devoted to protecting health insurance access
for all New Yorkers, regardless of health status.
S.C.A.R.E. has also presented at numerous medical conferences and
community
symposiums, including the 1995, 1996 and 1998 New York State Sickle Cell
Advisory Committee Annual Symposiums, the 1996 National Sickle Cell
Conference in Mobile, Alabama, the 1997 Pennsylvania State
Conference of the Sickle Cell Disease Association of America (SCDAA), and
in 1997, the 25th Anniversary Convention of the National Sickle Cell
Disease Programs Meeting and the SCDAA in Washington, D.C. In 1998,
S.C.A.R.E. was approached to develop and participate as featured presenters in
the first state sickle cell conference in Little Rock, Arkansas.
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