CF Roundtable Founders & Jacoby Angel Awards

The US Adult CF Association held its Award Ceremony to present the organization’s 2015 Jacoby Angel Award and 2015 Founders Award. The ceremony was held in Phoenix, Arizona on October 9, 2015 during the North American CF Conference and had 102 in attendance. Watch the award ceremony by clicking on the link at the end of this blog post.

The five Founders Award nominees were honored and included Dr. Michael Boyle, Jessica Martens, Connie St. Clair, Marion Jones and James Passamano. The Founders award was presented to James Passamano. James is a partner in the law firm of Sufian & Passamano and has spent the past 20 years advocating for the rights of people with CF. James successfully brought a federal civil rights case pro bono against Arkansas Medicaid in 2014/2015 regarding the provision of coverage for medically necessary treatment. The case is regarded as one of the most significant victories for the rights of Medicaid beneficiaries in the United States. The case also strengthened the ability of all people with CF to gain access to the treatment they need to fight CF.

The four Jacoby Angel Award nominees were honored and included Isabel Stenzel Byrnes, Emily Kramer-Golinkoff, William Elder, Jr. and Emily Schiller. The Jacoby Angel Award was presented to Isabel Stenzel-Byrnes. Isabel has worked to raise awareness about CF since childhood. She is the co-author of the best selling book The Power of Two and the co-star of the documentary The Power of Two portraying the lives of twin sisters with CF and their journey through lung transplant. Isabel was instrumental with her sister Anabel in changing a Japanese law that prevented people with CF in Japan from gaining access to life saving CF medications. Isabel is a longtime volunteer for CFRI and the U.S. Transplant Games and is a hospice social worker.

The award ceremony also included a candle lighting ceremony which honored the memory of Dr. Jacoby, the founders of our organization, Catherine Martinet and Pammie Post who were founder-like in their contributions to USACFA.

We honored some long time supporters of USACFA and the CF adult community by asking them to be candle lighters: Dr. Pat Walker, Dr. Berdella, Joan Finnegan Brooks, Dr. Marcia Katz, Dr. Noreen Henig, Dr. Ahmet Uluer, Dr. James Yankaskas, Dr. Julie Biller, Dr. Jeff Wine and Marlene Wine, Paula and Debbie Motenko. The attendees were asked to think about the memory of a person with CF who had inspired them or who inspires them now as the candles were lit.

The award ceremony included recognition of past Founders Award winners Dr. Nick and Dr Yankaskas and 15 CF Center social workers were called to the front and presented with small gifts as a token of appreciation for their dedication to helping adults with CF. The award ceremony was a memorable event that left many attendees visibly moved by the stories of dedication to the CF community the USACFA award nominees, recipients and founders exemplify. Many in attendance later remarked the award ceremony was one of the most memorable events they had attended.

You can watch the entire award ceremony while you are doing your treatments by above.

Or watch a few minutes as the Founders Award nominees are recognized and the award is presented by clicking on this link.