Patient Advocate and Leader: Joan Finnegan Brooks
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Joan Finnegan Brooks |
Joan Finnegan Brooks' luck began early in life. In 1960, Joan was diagnosed with cystic fibrosis (CF) at the age of one month. She was adopted by two wonderful parents, who despite losing their 2 1/2 year old daughter to CF, and having a son with CF, opened their hearts to Joan. As a 46-year-old adult with cystic fibrosis, Joan is beating the odds and living life to the fullest.
Joan's involvement with the Cystic Fibrosis Foundation began as a child, as a result of her parents' volunteering from the earliest days of the Foundation. The mission of the Foundation "is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease." (For more information, see www.cff.org.) Joan has been an active volunteer for the CF Foundation at both the local and national levels, and is an advocate for all people and families affected by cystic fibrosis. A sampling of Joan's numerous volunteer activities includes:
- Past President of the Massachusetts/Rhode Island CF Chapter;
- Past member of the Board of Directors of the Massachusetts/Rhode Island CF Chapter;
- Past member of the CF Foundation's Leadership Council;
- Current member of the CF Foundation's Advisory Task Force on Adult Issues;
- Current author of a column about adult issues in Homeline, a newsletter produced by the CF Foundation's specialty pharmacy, CF Services; and
- Current co-chair, with a parent representative, of a Foundation Task Force that is focused on empowering members of the CF community to become involved in quality improvement initiatives at their local CF Centers.
Since 2004, Joan has served as the patient representative on the CF Foundation's Quality Improvement Initiative Strategic Planning Advisory Committee. The Committee includes CF Center directors and patient and parent representatives, and is focused on quality improvement processes in the network of 117 CF Foundation-accredited care centers across the country. Nationwide, information is provided to a confidential patient registry to spot trends in treatment and to track clinical outcomes. The goal is to continuously improve care for people with cystic fibrosis.
Joan's longtime volunteer work also includes fundraising for CF research and its treatments, a key mission of the CF Foundation. Joan's advocacy work includes meeting with United States Senate and Congressional leaders, and effectively testifying on behalf of the Foundation to advocate for more funding for the NIH.
Joan also shares her ideas about living successfully with cystic fibrosis in presentations, a sampling of which include:
- In 2004 and 2005, Joan presented "Keys to Successful Living with CF" at the Foundation's North American Medical Conference, an international medical conference for clinicians and researchers. Her presentation focused on practical life skills clinicians need to teach young patients with CF to become responsible adults who can manage their own treatment while achieving their goals and dreams.
- In 2006, Joan participated in a Foundation Web cast, "Building Life Skills to Manage CF" (available in Web cast archives at www.cff.org), and co-chaired "CF Education Day" in New York City.
Joan serves on the CF Center Steering Committee at Children's Hospital Boston as part of its Partnership in Care initiative that promotes families and patients as partners in the care of cystic fibrosis. Joan serves as a liaison between the CF patient and family community and the clinical staff. She is also a founding member of the Patient and Family Advisory and Advocacy Committee. She frequently speaks about self-advocacy and self-management at hospital-sponsored support groups and workshops for parents. Joan encourages people with CF to be equal partners with their health care team, to be involved in decision-making, and to build knowledge about their own health care. Joan is deliberate about language, using "People first" principles; she describes herself as a person with CF, not as a patient. Joan notes the importance of changing the dialogue.
The median age of survival for people with cystic fibrosis is 36.8, years, according to 2005 data. Joan remembers when her 15-year old brother, John, died in 1969 from CF. At the time, she was nine and she did not know anyone older than herself with CF. Now, as an adult with CF, it is important to Joan to be visible to members of the CF community. When Joan speaks at public events, she is demonstrating her longevity! She believes it is vital for young people and parents to understand that there are adults living with this disease - completing higher education and realizing career goals, developing relationships and raising families - reaching the same milestones as people without CF. Joan encourages parents not to limit their children's dreams or their potential, but to be advocates for their children by supporting their independence and helping them learn how to self-manage their CF care.
Athletics is an important part of Joan's health care routine; she played field hockey in high school and currently participates in running and cycling events to keep her lungs healthy. Needing daily insulin injections to treat her CF-related diabetes - diagnosed at age 27 - doesn't slow her down. Joan completed the Marine Corps Marathon in 1998 and several half-marathons as well.
Joan has certainly benefited from advances in patient care and new drug development sponsored by the CF Foundation. In the last twelve years, five new drugs were approved for use, and more than two dozen drugs are in various stages of clinical testing. The course and outlook of cystic fibrosis is shifting. Given the vast improvements in the quality and length of life for people with CF, as a person in her 40s living with CF, Joan is a witness to these changes.
Joan has received awards for her outstanding volunteer work. She recently received the CF Foundation's Alex Award, given annually to honor the accomplishments of an individual with cystic fibrosis, by Frank Deford in memory of his daughter, Alex. Joan was named 1998 Volunteer of the Year in an award sponsored by BankBoston Corporation (now part of Bank of America Corporation), for her leadership in the CF community. Joan derives great personal satisfaction from her volunteer work in the cystic fibrosis community and believes that her work serves as a "thank you" to the many families and volunteers in the CF community.
Joan is a graduate of Brown University, with a B.A. in Economics, and has spent much of her professional career in global financial services. In 2002, she changed career tracks. She founded and is the principal consultant of the company Patient-Focused Market Research. Joan advises organizations on the importance of identifying, understanding, and incorporating patient and family perspectives and experiences in their development processes and program recommendations. She works with drug companies to assist their understanding of the CF disease process, its challenges, and the impact of potential therapies from a patient-focused perspective.
For more information about the Cystic Fibrosis Foundation, see www.cff.org.