CMPI Board Member, friend and inspiration Suzanne Pattee is the July 2006 recipient of the Heroes of Hope Award. The award is given by The Heroes of Hope⢠Living with CF Program Advisory Panel. It is given to recognize people with CF who give hope and serve as role models to others. Chosen from a nationwide pool of candidates, Suzanne received the honor for her ability to inspire others with CF through her positive attitude, strong community outreach, and her outstanding commitment to proactively manage her health. Suzanne, a Virginia resident, will be joined by family, friends, and her CF care center team to receive her award today, on August 23,during a ceremony given in her honor at the Johns Hopkins Hospital Adult CF Program.
I have known Suzanne for over ten years. We have rarely talked about her illness. But she is a living example of what the combination of determination and medical innovation can do to provide people with longer and fruitful lives. We both remember the time that the Clinton folks — when they were planning to reinvent health care — told companies working on CF drugs that it would be more cost-effective to focus on diseases with larger populations. (That’s right people, it takes a village to ration care.) And even now, people with CF find their access to new medicines in Canada and Europe rationed and limited and delayed. Thankfully, Suzanne has fought against that dark movement here in America. Her accomplishments are many and I wish everyone that purports to care about medical progress had half her courage and passion!
Here’s more about this remarkable woman from the press release issued about her award:
“Suzanne has grown to be an extraordinary leader in the CF community,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation who has been a colleague of Suzanneâs for more than 20 years. “The depth and richness of her experience, including her law degree and previous work with the biotechnology industry, has contributed to her skills to benefit the CF community at large. Never have I known a more intelligent, quick-witted and above all, determined individual â Suzanne is clearly an inspiration to us all.”
Suzanne has faced CF head-on since she was diagnosed at 6 months of age after experiencing common symptoms including pneumonia and failure to thrive. At that time, the median age of survival for someone with CF was five years. According to the CF Foundation’s National Patient Registry, the predicted median age of survival is now 36.8 years. Today, at the age of 43, Suzanne realizes that her experience with CF is not typical and feels extremely lucky in her life. She views having CF as a surmountable hurdle and, at times, a blessing in disguise as it allows her to interact with and be inspired by others with CF whom she might never have had the chance to meet.
Not one to take a back seat approach to issues she is passionate about, Suzanne first began educating others about CF as a CF Foundation poster child at age six. She has worked with the CF Foundation for 14 of the past 20 years, and leverages her insight as an attorney in her current position as the CF Foundationâs Vice President of Public Policy and Patient Affairs. In this role, she advocates for people with CF with the U.S. Congress and the Administration, and spearheads the CF Foundationâs focus on adults with CF.
“The Heroes of Hope Living with CF program is proud to recognize Suzanne for her tireless dedication to providing legal and emotional support to those with CF who desperately need it,â said Lisa Yourman, Heroes of Hope Living with CF Advisory Panel member and CF advocate. âBy promoting the rights of CF patients nationwide and selflessly dedicating her life to help others overcome and persevere through CF and other challenges, Suzanne is an ideal recipient of the Heroes of Hope award.â
Through her steadfast work with the CF Foundation, Suzanne is faced daily with the trials CF brings to children, adults and families. She uses this as her inspiration to help lessen the burden of CF on others by fighting for federal and state policies to ensure access to life-saving CF medication and specialized CF care. Suzanne has been a leader in bringing adult-related CF issues to the forefront of the CF communityâs agenda, and was an initiator of the CF Foundationâs infection control policy guidelines that seek to reduce the risks to people with CF from potential cross infection.
Suzanne strives to live every day with meaning and passion. Suzanne recognizes the critical importance of consistently following her daily medical regimen, which consists of inhaled medications, antibiotics, digestive enzymes, nasal irrigation and chest physical therapy. Suzanne makes regular physical exercise a part of her routine, including activities like dancing and swimming, and is careful to monitor and care for her CF-related diabetes.
She also enjoys spending time with her friends and family, including her 11 nieces and nephews, playing with her dog, Daisy and singing along with Broadway musicals.
.
