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 $50,000 to four 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 that these grants will help improve the lives of people with bleeding and platelet disorders.”
Following are the organizations that were awarded a CSL Behring LEAD grant in this round:
Platelet Disorder Support Association (PDSA), Rockville, Md.
PDSA will use its grant from CSL Behring to create four patient support groups, including an online support group for teens and a teleconference support group for young adults. The grant will also support the development of educational materials, speaker assistance and a toll-free number. PDSA is the nation's leading non-profit health organization dedicated to supporting people with idiopathic thrombocytopenic purpura (ITP), a rare bleeding disorder that causes extremely low platelet levels.
“The LEAD grant will enable PDSA to continue to support and expand our Peer Communication and Support Group programs,” said Caroline Kruse, Executive Director of PDSA. “ITP can be a very isolating disease. Our support groups provide a forum where we can educate and advocate, and also offer ITP patients and families an opportunity to share their experiences. There is nothing more comforting than speaking with someone who understands your illness.”
Tennessee Hemophilia & Bleeding Disorders Foundation (THBDF), Smyrna, Tenn.
THBDF will use its grant from CSL Behring to launch a new program called Optimizing Care and Choice Through Triple A: Awareness, Advocacy and Action. The main objective of the program is to establish a grassroots advocacy initiative in Tennessee for the bleeding disorders community where one did not previously exist. This includes revising and updating the state Hemophilia Program, increasing the involvement of women with bleeding disorders in the advocacy initiative and creating an Emergency Medical Service treatment guideline for individuals with bleeding disorders.
“Due to many recent changes in state legislation, insurance coverage and the economy, it has become imperative that we develop and launch a structured advocacy program to meet the needs of the bleeding disorder community,” said Mary Horford, Executive Director of THBDF. “It is our hope that this new initiative will result in an organized program with a clear, focused direction that can easily be replicated by other organizations to ensure growth and sustainability.”
Rocky Mountain Hemophilia & Bleeding Disorders Association, Bozeman, Mont.
RMHBDA will use its grant from CSL Behring to develop the infrastructure for a grassroots advocacy program which will include customized advocacy training for RMHBDA’s Family Camp. The grant will also help fund research and development of an advocacy guide for Montana and Wyoming, an advocacy page on the organization’s existing website and a statewide advocacy day.
“We are a small organization that serves Montana and Wyoming, across vast geographical distances,” said Ann Schrader, Executive Director of RMHBDA. “The LEAD funding will help us implement our advocacy program over both states and help us educate both members and policy makers about the needs of our bleeding disorders community."
Central California Hemophilia Foundation (CCHF), Sacramento
CCHF, a chapter of the National Hemophilia Foundation, plans to use the grant from CSL Behring to establish a Hemophilia Advocacy Action Team composed of young adults. The grant builds on CSL Behring’s Raise Your Voice! youth advocacy program by creating a team of six to ten young adults who will be trained on issues surrounding access to care, including both plasma and recombinant therapies. A mentoring program for this team will also be developed in concert with local legislators and state agency staff.
“The LEAD grant will enable us to expand our future leaders program called the Hemophilia Advocacy Action Team,” said Sean Hubbert, President of CCHF. “This program will equip young people and expand their future opportunities, while also educating policymakers about the issues important to the bleeding disorders community.”
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, critical care and wound healing. The submission deadline for the next round of grants is October 31, 2010. Applications, specific criteria for applying and more information about the LEAD program are 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