The Celebrity Bowling Challenge benefits the programs and services of The K.I.S. Foundation, Inc. a501(c)(3)non-profit organization dedicated to "raising awareness" of Sickle Cell Disease, and The Dorothy H. Shepard Scholarship Fund, which provides scholarships to SCD patients in search of a higher education.
The K.I.S. Foundation is a non-profit organization that promotes awareness of Sickle Cell Disease and research to find a cure. Founder Kiki Shephard has been an advocate for Sickle Cell Disease research and prevention for almost two decades. Join the K.I.S. Foundation in the fight to combat Sickle Cell Disease.
This amazing event was designed to stress the need in educating the public about Sickle Cell Disease, stimulating the continued dialogue about how it is spread, its debilitating effects, ways of prevention, the bone marrow transplant surgery, and the need to get tested now. The "Celebrity Bowling Challenge" brings together members of the entertainment industry, businesses, families and Sickle Cell patients.
As you know, Sickle Cell Disease (SCD) is a common inherited blood disorder that affects an estimated 90,000 to 100,000 Americans, and can lead to lifelong disabilities and reduced average life expectancy. The disease disproportionately affects people of color, and occurs among roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births.
SCD is a major public health concern that warrants ongoing federal support, and is a priority for President Obama and his Administration.
That’s why the Department of Health and Human Services (HHS) is actively engaged in a number of efforts to help do the following:
HHS is developing Healthy People 2020 objectives to support SCD-related health promotion and disease intervention initiatives across the federal government. To evaluate progress in meeting these objectives and better inform future federally funded research and prevention efforts, the Department is developing a pilot national surveillance system to collect data to better understand characteristics of those affected by SCD, what complications these individuals are experiencing, and what gaps exist in meeting their health needs.
Through the Health Resources and Services Administration’s SCD Treatment and Newborn Screening Programs, HHS is also expanding access to care for individuals with SCD by increasing the number of providers treating patients with SCD who are knowledgeable about current treatment options and identifying those with the disease sooner so that they can begin receiving recommended treatments. HHS is also increasing patient education and outreach efforts for individuals with SCD or who are carriers of the sickle cell gene mutation to prevent infections and ensure needed medical care is received.
The Centers for Disease Control and Prevention (CDC) has additional materials to raise awareness of SCD among teachers, non-medical professionals, and other members of the general public.
The White House is also investing in critical research on SCD at institutions across the country. The National Institutes of Health (NIH) funds research focused on increasing the effective use of known SCD therapies, discovering new treatment options, ameliorating complications, and ultimately finding a cure. In September, NIH released the first systematic and evidence-based report to assist clinicians in delivering care to people living with SCD.
Finally, the CDC has an agency-wide working group to explore opportunities to address unmet needs in SCD research, surveillance, and health education. Through the efforts of this working group and consultation across agencies within HHS, the Department will consider other ways in which it can strengthen its current activities regarding SCD.
We still have much more work to do, but we will continue to make progress — not just to help the tens of thousands of Americans currently living with sickle cell disease, but to ensure that one day, we have a generation where the disease is only something that’s read about in history books.
Thank you for your adding your name to the White House Petition for the Sickle Cell Treatment Reauthorization Act, and for your involvement in the We the People platform.
~We the People, The White House
Raising Awareness of Sickle Cell Disease and registering Bone Marrow Donors with K.I.S. Foundation Board member Dondré T. Whitfield; Bone Marrow Ambassador, Nita Thompson; Luther Craddock & Sherman Kelley of the Prince Hall Masons of the Joseph A. Menkins Lodge No. 103; and KiKi Shepard, Executive Director of the K.I.S. Foundation at the 160th Annual Communication Grand Session, July 13-14,2015.
This was a magnificent and historic event! Special thanks to the Grand Master, the Honorable Lovell Morgan for the invitation to attend, register donors, and for the opportunity to address all of your members about Sickle Cell Disease.
H. R. 5124 – “Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2014”
The SCTRA is a bipartisan legislation introduced to the House of Representatives to renew the nation’s programs for research, surveillance, prevention, and treatment of SCD for another 5 years. Bill H.R. 5124 will expand the national newborn screening program, develop a comprehensive adult transition program, continue public surveillance, expand research efforts and establish up to 25 Sickle Cell Treatment Centers throughout the US all in an effort to support the creation of a sustainable comprehensive model of care for individuals affected by SCD.
This is a huge step for maintained, comprehensive care, but this Bill needs your support. We have 30 Days to sign the White House Petition and make a difference in the lives of patients and families living with Sickle Cell Disease. Help us to reach our goal of 100,000 Signatures by October 22, 2014 to secure the introduction of this Bill in the Senate and get H.R. 5124 passed.
SIGN the Electronic Petition Online (takes 10 seconds of your time)
September is National Sickle Cell Disease Awareness Month and the Founder & Executive Director of The K.I.S. Foundation, Inc. is challenging you to join in the fight and give from your heart by donating to The K.I.S. Foundation, Inc.
Visit our Ways to Give section on the website or simply click on the yellow and brown ribbon to make a difference today!
Visit our Events page to purchase your tickets or sponsorship package today!