x-sender: governor.haley@sc.lmhostediq.com x-receiver: governor.haley@sc.lmhostediq.com Received: from mail pickup service by IQ12 with Microsoft SMTPSVC; Wed, 25 Feb 2015 19:35:02 -0500 thread-index: AdBRXA8kumsis/00RGetkFMXBYxZfg== Thread-Topic: 4p-/Wolf-Hirschhorn Syndrome Awareness Day From: To: Subject: 4p-/Wolf-Hirschhorn Syndrome Awareness Day Date: Wed, 25 Feb 2015 19:35:02 -0500 Message-ID: <8BB7DFF22C60420EAD331BC40BFEE8AD@IQ12> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit X-Mailer: Microsoft CDO for Windows 2000 Content-Class: urn:content-classes:message Importance: normal Priority: normal X-MimeOLE: Produced By Microsoft MimeOLE V6.1.7601.17609 X-OriginalArrivalTime: 26 Feb 2015 00:35:02.0758 (UTC) FILETIME=[0F32E860:01D0515C] CUSTOM Ms. Denise D. Barnes Vice President 4p- Support Group 2336 Griffith Park Blvd. Los Angeles CA 90039 realbydenise@sbcglobal.net 8184688671 8184688671 PROC 4p-/Wolf-Hirschhorn Syndrome Awareness Day Dear Governor Nikki R. Haley, We are asking you to join us in our efforts to generate awareness and understanding of 4p- syndrome, a very rare genetic disorder. We are requesting a proclamation from you to declare April 16, 2015 as 4p-/Wolf-Hirschhorn Syndrome Awareness Day. By doing so, you will be helping our initiative to bring awareness about this complex syndrome and to help save lives! 4p- Syndrome Awareness Day was established by the 4p- Support Group, a non-profit organization and the only national organization to support those living with and affected by 4p- syndrome through every stage of life, to focus the spotlight on this genetic disorder. For more information about 4p-,visit www.4p-supportgroup.org). We estimate 4p-Syndrome occurs in 1 out of every 50,000 births, with an estimate that 30% die within the first few years of life. However, we are beginning to see that rate decrease due to advances in medical technology and community awareness. A blood sample for a DNA test is all that is needed for a diagnosis. However, if the patient has a small amount of missing material of the 4th chromosome more advanced DNA testing may be needed. 4p- syndrome has no cure. By signing a proclamation for South Carolina, you are supporting this life-saving effort and acknowledging the continuous awareness efforts of citizens in the State of South Carolina. A Proclamation request will be sent to every state. We hope you will consider having your State represented in this very special day, as we have families in South Carolina afflicted with this Syndrome. If you have any questions, please contact me via email or at: 818-468-8671. Sincerely, Denise Barnes, Vice President 4p- Support Group Tax I.D. #91-2005528 WHEREAS, the good health and general well-being of the people of South Carolina is strengthened by our awareness and understanding of a genetic disorder known as 4p- syndrome, with Wolf-Hirschhorn as the main syndrome; and WHEREAS, children with 4p- syndrome are usually born with low birth weight and develop slowly, both cognitively and physically, compared to their same-age peers, and experience medical complications while still maintaining pleasant and lovable personalities; and WHEREAS, dedicated professionals are presently involved in valuable research to explore new therapies and diagnostic tools, and to offer hope to persons with 4p- syndrome; and WHEREAS, the 4p- Support Group estimates that approximately 1,000 individuals in the United States have 4p- syndrome, though it is thought many remain undiagnosed; WHEREAS, it is incumbent upon the citizens of South Carolina to work together as a people and as a state to increase research into understanding the syndrome, to advocate for effective diagnostic screenings, to support the development of improved therapies for early intervention and other necessary and critical treatments, as well as join in recognizing and applauding the valuable role which families and advocates of those who have 4p- syndrome play in helping our medical community to advance the knowledge and awareness of this syndrome; and WHEREAS, the state of South Carolina is pleased to join people throughout our nation in promoting a special celebration which seeks to raise awareness of 4p- syndrome, designed to have a positive and productive impact on the lives of all people with 4p- syndrome and their caregivers. NOW THEREFORE, I, Governor Nikki R. Haley, Governor of the State of South Carolina, do hereby proclaim the 16TH DAY OF APRIL 2015 4p-/WOLF-HIRSCHHORN SYNDROME AWARENESS DAY in the State of South Carolina, and invite all citizens to duly note this occasion.