CSL Behring, a global leader in the plasma-protein biotherapies industry and a subsidiary of CSL Limited (ASX:CSL), has awarded advocacy grants totaling almost $100,000 to six patient organizations through the Local Empowerment for Advocacy Development (LEAD) program. LEAD grants support the grassroots advocacy efforts of organizations committed to helping people who use plasma-derived or recombinant therapies to manage rare and serious diseases.
"CSL Behring is pleased to recognize and support these organizations, all of which play a vital role in expanding patient access to information and healthcare," said Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring. "We hope these grants will help improve the lives of people with bleeding disorders, immune deficiencies and hereditary angioedema."
The following organizations were recently awarded CSL Behring LEAD grants:
The Hemophilia Foundation of Maryland (HFM), Parkville, MD
HFM received a LEAD grant from CSL Behring to support its legislative initiatives for Maryland Bleeding Disorders Standards of Care. The Foundation is looking to build upon its success from the previous legislative session when the bill was first introduced.
"In 2010 our small but proactive bleeding disorders community championed the introduction the Hemophilia Standards of Care Act (Health Insurance Coverage for the Treatment of Bleeding Disorders)," said Executive Director Emma Miller-Clark. "The LEAD grant will enable us to pick up where we left off in 2010 and provide funding to continue HFM Maryland Days and educate future advocates. Thank you CSL Behring for bringing us one step closer to passage of the Hemophilia Standards of Care Act!"
The Bleeding Disorders Foundation of Washington (BDFW), Edmonds, WA
LEAD grant funds to BDFW will be used to support its state advocacy day in Olympia, WA and to increase participation from the eastern part of the state.
"The Foundation is thrilled to be awarded a CSL Behring LEAD Grant. It is this kind of dedication that CSL Behring provides back to the bleeding disorder community that allows chapters like ours to provide excellent care and service to our community," Kristian Prill, Executive Director said. "The funding being provided will allow us to increase education and advocacy for bleeding disorders and healthcare reform at a critical time in the process."
The Immune Deficiency Foundation (IDF), Towson, MD
IDF will use its LEAD grant to support Capitol Hill Day where individuals with primary immune deficiencies and their families travel to Washington, DC to meet with their legislators and discuss issues impacting this community. In addition to Capitol Hill Day, the IDF will also jointly conduct a Raise Your Voice! program with CSL Behring. Raise Your Voice! helps teenagers become active advocates and is part of the CSL Behring LEAD program.
"The IDF thanks CSL Behring for the LEAD grant and for letting the voices of those with primary immunodeficiencies be heard," Lawrence A. LaMotte, Director Public Policy, IDF, said.
The New England Hemophilia Association (NEHA), Dedham, MA
NEHA will use the grant from CSL Behring to expand its consumer network and to train volunteers. In addition, the LEAD grant will provide staffing resources to help drive NEHA’s advocacy priorities through legislation and coalition building.
"NEHA is grateful to receive a LEAD grant from CSL Behring in support of our Advocacy program. Promoting the needs of the bleeding disorders community in our six-state area presents many challenges. We look forward to working with CSL Behring to serve our community," said Kevin R. Sorge, Executive Director, NEHA.
The Midwest Hemophilia Association (MHA), Kansas City, MO
MHA will use its LEAD grant to bolster legislative efforts in support of passage of Standards of Care for People with Bleeding Disorders in Missouri. In addition, MHA will start grassroots advocacy in Kansas and also help educate the public about women’s bleeding disorders.
"MHA is delighted to receive this generous LEAD grant from CSL Behring. This grant will help our ultimate goal to make all our members better self-advocates," Kristin Marema, MHA Board Member, said.
The Hereditary Angioedema Association (HAEA), Honolulu, HI
The HAEA will use its LEAD grant funds to support the establishment of a public policy program. Already, the HAEA held its first federal advocacy day where select volunteers traveled to Washington to inform their legislators about hereditary angioedema and the need for increased research into this potentially life-threatening condition.
"The Association is passionate about making a better life for all HAE patients and is grateful for the opportunity to advocate for HAE research on a federal level," said Janet F. Long, Executive Vice President of the US HAEA.
LEAD Grant Application Deadline
LEAD grants are awarded semi-annually. CSL Behring considers grant proposals which relate to bleeding and platelet disorders, immune deficiencies, pulmonary disease and critical care. The submission deadline for the next round of grants is April 30, 2011. Applications, specific criteria for applying and more information about the LEAD program is available here.
About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide.
CSL Behring therapies are indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in newborns.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited (ASX:CSL), a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit www.cslbehring.com.
Manager, Corporate Communications