6.1K
Downloads
475
Episodes
CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
Wednesday Jun 27, 2018
Wednesday Jun 27, 2018
Ann Robinson is well known to the national CF community. Mother to Carl, who has CF, and the first Executive Director to be hired by CFRI, Ann has spent decades mentoring parents facing the recent diagnosis of their children with cystic fibrosis. In this personal video, Ann shares what helped her to be a strong advocate for Carl, who is now happily married, a father, and employed in a field he loves.
Recorded by Brandon Delgado and Alana de Ocampo.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences.
Thursday May 31, 2018
Thursday May 31, 2018
Gianna Altano was an amazing young woman who lost her battle with CF at the age of 23. Sydney Altano, her mother, shared Gianna's story at the 2018 Embrace Retreat for mothers of children and adults with cystic fibrosis. Through the most unimaginable loss, Sydney has navigated pain and growth, and her personal story is both moving and inspiring.
CF Community Voices is made possible through the support of Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences.
Thursday May 31, 2018
Thursday May 31, 2018
Gianna Altano was an amazing young woman who lost her battle with CF at the age of 23. Sydney Altano, her mother, shared Gianna's story at the 2018 Embrace Retreat for mothers of children and adults with cystic fibrosis. Through the most unimaginable loss, Sydney has navigated pain and growth, and her personal story is both moving and inspiring.
CF Community Voices is made possible through the support of Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences.
Wednesday May 23, 2018
Wednesday May 23, 2018
May is Cystic Fibrosis Awareness Month. This video documents the power of CF advocacy, during CFRI's advocacy and awareness day at the Capitol in Sacramento, California, when the State Senate passed a resolution declaring May to be CF Awareness Month in California. Individuals with CF, as well as parents, siblings, and friends of those with CF, met with their representatives to raise awareness and encourage support for access to therapies and quality care.
Filmed and edited by Brandon Delgado.
CF Community Voices is made possible through grants by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.
Music: https://www.bensound.com
Wednesday May 23, 2018
Wednesday May 23, 2018
May is Cystic Fibrosis Awareness Month. This video documents the power of CF advocacy, during CFRI's advocacy and awareness day at the Capitol in Sacramento, California, when the State Senate passed a resolution declaring May to be CF Awareness Month in California. Individuals with CF, as well as parents, siblings, and friends of those with CF, met with their representatives to raise awareness and encourage support for access to therapies and quality care.
Filmed and edited by Brandon Delgado.
CF Community Voices is made possible through grants by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.
Music: https://www.bensound.com
Wednesday Apr 25, 2018
Wednesday Apr 25, 2018
In this first segment of her comprehensive podcast on financial resources for the CF community, Tifffany Raffino, LCSW, Clinical CF Social Worker at UC San Francisco, covers income assitance programs to help cover the high medical costs associated with the disease. These include Medicaid, SSDI, caregiver income support, state and county programs.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.
Wednesday Apr 25, 2018
Wednesday Apr 25, 2018
In this second segment of her comprehensive podcast on financial resources for the CF community, Tifffany Raffino, LCSW, Clinical CF Social Worker at UC San Francisco, covers strategies for covering the high medical costs associated with the disease. These include insurance plans, hospital cost negotiations, and medication assistance through foundations and pharmaceutical company programs.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.
Wednesday Apr 25, 2018
Wednesday Apr 25, 2018
In this third segment of her comprehensive podcast on financial resources for the CF community, Tifffany Raffino, LCSW, Clinical CF Social Worker at UC San Francisco, covers the extensive range of support programs to help those living with CF. These include CFRI's programs, private foundations, scholarships, "wish" organizations for children and adults, and much more.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.
Wednesday Apr 25, 2018
Wednesday Apr 25, 2018
In this third segment of her comprehensive podcast on financial resources for the CF community, Tifffany Raffino, LCSW, Clinical CF Social Worker at UC San Francisco, covers the extensive range of support programs to help those living with CF. These include CFRI's programs, private foundations, scholarships, "wish" organizations for children and adults, and much more.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.
Wednesday Apr 25, 2018
Wednesday Apr 25, 2018
In this second segment of her comprehensive podcast on financial resources for the CF community, Tifffany Raffino, LCSW, Clinical CF Social Worker at UC San Francisco, covers strategies for covering the high medical costs associated with the disease. These include insurance plans, hospital cost negotiations, and medication assistance through foundations and pharmaceutical company programs.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.