advocacy - Cystic Fibrosis Research Inc.

CFRI’s Many Voices ~ One Voice CF Advocacy and Awareness Campaign

	CFRI’s Many Voices ~ One Voice Campaign: Broadening Community & Creating Change Our Many Voices ~ One Voice Campaign focuses on educating and engaging those impacted by CF, the general public and legislative sectors to broaden understanding of the challenges faced by the cystic fibrosis community. The campaign utilizes multi-integrated marketing methods, including social media; works with activists and other CF agencies in grass roots and personal community building activities; and focuses on increased legislative advocacy. Living with CF presents a multitude of challenges – physical, emotional, and financial. Barriers to medical care and therapies must be reduced; funding to find a cure for CF must be increased. Our community deserves a better quality of life. We need your voice to make this happen.
	Strength Is In Numbers: To Be Heard, We Must Work Together Cystic fibrosis advocacy is vital in light of CF’s classification as a “rare disease,” i.e. one that impacts less than 200,000 people in the United States. With approximately 30,000 people in the United States diagnosed with CF, the need to heighten understanding is critical for the health and wellbeing of those diagnosed with and impacted by this complex disease.
	Many Voices ~ One Voice Key Goals: Educate the CF community, the general public and legislative sectors about the disease and the impact of its rare disease status. Build and strengthen coalitions of CF agencies and activists to increase state and national awareness of cystic fibrosis-related issues in the public and legislative sectors while supporting individuals with CF. Track and take public position on national and state legislation important to CFRI as an organization and individuals with CF, including increased access to treatments and services, and increased funding for CF research. Serve as a trusted resource throughout the nation’s federal and state Legislative, Executive and Administrative bodies while focusing on disease education, implications of rare disease status, and access to treatments, co-pays, and cost sharing.
	Advocating on the Legislative Level A CF community actively engaged with the public and governmental sectors will achieve greater mission impact, expand understanding of cystic fibrosis and its challenges, and inspire the public’s involvement to improve the lives of those living with the disease. Together, we can promote treatment options, access to medications, research, and continuing development of therapies that will provide a better quality of life for those diagnosed with CF. To find out who your elected representatives are, click here. To track current bills and to receive email notifications for legislative issues you can go to www.govtrack.us and https://www.congress.gov.
	Raise Your Voice! Our Many Voices Make One Strong Voice! Click here to get involved with our campaign. You will be kept updated on issues impacting the CF community and will receive action alerts so that you can raise your voice in support of the CF community. Through our campaign you can send letters to your elected officials to share your opinions on bills impacting our community. Past alerts have addressed increasing federal funding for CF research and decreasing barriers to specific medications.

For a list of past actions through the Many Voices ~ One Voice Campaign, click here.

Watch Our Many Voices ~ One Voice CF Awareness Video

Please watch and share this moving video with your friends, family and colleagues, which was created to raise awareness of cystic fibrosis among those who are unfamiliar with the extreme challenges faced by those with the disease. The film features members of our CF community, as well as the song Breathe, written by English singer-songwriter Matt Scales, who lost his battle with CF, and which features the voices of Matt and three other individuals with CF.

Many Voices ~ One Voice CF Advocacy and Awareness Campaign

Made possible by a

Vertex Pharmaceutical Circle of Care Award

Additional support provided by a grant from Genentech