Jenn is married to her best friend and love of her life, Bert, with two wonderful girls. Samantha is 18, and soon graduating from high school, and Lexi is 9. Jenn currently works with the Crestone Group serving as the Director of the Eastern Division. Jenn enjoys many activities, but her passion is competitive show jumping in the equestrian world. In fact, she has designed and executed two different annual walks for cancer, the latest one, Hoofin’ For The Cure, involves her horse Maximus.
Jenn is an 8 year breast cancer survivor who was just recently diagnosed with Li-Fraumeni Syndrome. Jenn is committed to advocating for all those who battle cancer, whether they are a patient or a researcher, in creating positive and hopeful outcomes. She always knew it was a possibility that she could develop cancer, as her mother died of breast cancer after an 8 year fight. Her mother taught her to be positive and live her life to the fullest no matter what the circumstances; to see the glass half full with her mother’s inspiration at the forefront.
Jenn knew she found a way to help create solutions when she attended the first Li-Fraumeni Conference in 2010. She is very honored and excited to be the President of the Li-Fraumeni Syndrome Association, Inc. Jenn knew she finally found an avenue in which to make a difference and effect change in an area that has affected not only many members of her family, but so many families around the world. She envisions a world someday where her children, grandchildren, and future family, won’t have to live in fear of the disease we know as cancer.
Susan Faulkner lives in Michigan with two growing boys and her husband. In addition to running, participating in triathlons and creating mosaics, Susan has dedicated her professional career to serving non-profit organizations through her expertise in organizational development operations management.
Her family was first impacted by Li Fraumeni Syndrome when her niece was found to have adrenal cancer at less than one year of age. While they didn’t know it at the time, both the baby and her mother would be diagnosed with LFS. Watching two family members struggle with the uncertainty and challenges of the disease has inspired Susan to help other families stricken by this rare genetic disorder.
Susan is proud to serve as a board member for this association and chairs the Planning and Fundraising Committees.
“There are many ways that each of us can spend our time in this world, and I believe that my support of the Li Fraumeni Syndrome Association, Inc. has the potential to have great impact on people’s lives by facilitating LFS research, patient support and the sharing of information.”
Georgia Engrebretson, a former research scientist at the University of Minnesota, is now referred to by her friends as a “professional volunteer”. Georgia’s volunteer career started in her sons’ schools as a tutor, library aide and fund raising chair and then grew into forming and running fine arts fair. Continuing as a volunteer coordinator in various organizations she eventually became floral arrangement/artwork chair for the high profile Art in Bloom fundraiser at the Minneapolis Institute of Arts where she has been a tour guide since 1995. Living in Minneapolis, Georgia enjoys art, reading, gardening, travel and baking.
Cancer has been part of Georgia’s life since shortly after her wedding. Her husband had a succession of cancers including melanoma, lymphoma and leukemia. While he was preparing for a bone marrow transplant her 4 year old son was diagnosed with choroid-plexus carcinoma. The suspected Li Fraumeni Syndrome diagnosis was confirmed two years later in 1992 when her son’s cancer returned. Her son died at the age of 6 1/2 and her husband followed two years later at the age of 40. Georgia’s older son was diagnosed with colon cancer at age 18, followed by the LFS diagnosis. He is now 28.
During the 30 years of dealing with LFS cancers Georgia found little information and almost no support for her family. “It felt as if we were all alone and the only family dealing with this devastating syndrome.” The 2010 LFS conference at the National Institute of Health was her first contact with other affected families. Excited to be on the LFS Association board, Georgia truly believes there is a strong need for family support in this community. Along with this goal she is also hoping to accomplish increased awareness, sharing of information about this disorder and research into understanding more about Li Fraumeni Syndrome.
John G. Berkeley
John Berkeley is a happily married, proud father of delightful 6 year old boy/girl twins. He lives in Bellingham, Massachusetts, where he enjoys spending time with family and friends, golfing and riding motorcycles. With an impressive 23+ years in the telecommunications industry, John reflects also on his longer lifetime success as a childhood cancer survivor. Having been diagnosed with rhabdomyosarcoma at age 5 and myofibroblastic sarcoma at age 42, he has been a patient of the Dana-Farber Cancer Institute for over 37 years.
In the early 1990s, John was told he had Li-Fraumeni Syndrome, like his late brother and father. In searching for information and answers to questions, he quickly learned there was little available. LFS is rare, with limited information and minimal education in the medical community. Subsequently, John recognized the need for support, advocacy, education and awareness of Li-Fraumeni Syndrome. The 2010 Li-Fraumeni Syndrome Conference held at the National Institute of Health brought several LFS families together, including John, for the first time providing the opportunity to collaborate positively about LFS and to support families affected.
John is proud and honored to have been the inaugural President of the Li-Fraumeni Syndrome Association, Inc. and was instrumental in the formation of LFSA. He says, “It is important to me that those diagnosed with LFS and their families have a place to go for support and information.” His goals remains to increase LFS awareness worldwide and collaborate with the medical communities to encourage increased research aimed at the understanding of Li-Fraumeni Syndrome.
Family Coordinator Chair/Co-Founder
Bonita Kline resides in New York City with her teenage son, second husband, four cats and one year old puppy. A garment and textile design executive for more than 25 years, Bonita now balances her time between freelance design projects and teaching design/art to youth in her community. She also practices energy massage and guided meditation for emotional release. Bonita is a founding member of the Conscious Leadership Coaching Partnership, a worldwide organization aimed at bringing conscious thinking into organizations everywhere. She enjoys pottery, gardening, biking and reading.
In four years’ time Bonita lost her husband who was just 41, her middle son at age 4 (who was actually diagnosed first) and then her youngest son at age 5. It was not until the second surgery of the third afflicted family member that Li Fraumeni Syndrome was diagnosed. By then, and with no real known successful therapy available, it was too little information, too late.
Bonita’s husband Tom would say over and over, “no family should have to go through this, ever.” He was determined that when their first ill son was cured, he would find a way to help stop this from happening to other families. Watching Tom deteriorate without finding any real answers was heartbreaking. He did not even know the full diagnosis. Bonita serves here in honor of her family so that “no family should have to go through this, ever.”
Scientific & Medical Advisor/Co-Founder
Robert Lufkin lives in Oregon with his wife and three energetic young daughters. They truly enjoy living in the beautiful Pacific Northwest and frequently go hiking, camping and XC skiing together. Rob also spends time cycling and finds solace and tranquility in the garden.
Robs family was first affected by Li Fraumeni Syndrome when his daughter was diagnosed with adrenal cancer as an infant. Ironically this occurred just prior to the start of his oncology training. Even as a medical oncologist it has been difficult for Rob to navigate through the many challenging decisions that accompany a diagnosis of LFS. It is his belief that the creation of the Li Fraumeni Syndrome Association will make those challenges easier for all those affected by LFS. In addition he is both optimistic and hopeful that the LFSA collaborating with the Li Fraumeni Syndrome Research Consortium can make dramatic strides in improving the lives of those dealing with this disorder. “Serving on the LFSA board is both an honor and privilege.”
Last year, both of Deb’s sisters tested positive for Li Fraumeni and she tested negative. “I can’t begin to describe to you how I felt. While I was waiting for my results, the annual conference took place in Washington D.C. and I had to be there. As I listened to everyone, medical experts and patients alike, one message was loud and clear – we need to bring this community together.” Along with her sister Jenn, Deb volunteered to help create this website: the communication tool she believes will bring the Li Fraumeni Syndrome world together.
Having held both non-profit and senior corporate management positions for over 25 years, it is her hope that she can contribute in some way to a life without LFS.
Deb Soprano has been happily married to her soul mate, Gary for 32 years. They live together with their daughter Maria, in Massachusetts.
Dunyelle lives in Boston with her fiancé, Armen, and works as a corporate securities lawyer at a Boston-based hedge fund. Dunyelle first heard about Li Fraumeni when Steph, a very dear family friend, was diagnosed a few years ago. As it turns out, Steph is the sister of Jenn Perry and Deb Soprano, both of whom are Li-Fraumeni Syndrome Association Founders and Board members. Steph reached out to Dunyelle to ask if she would be interested in becoming involved in the work LFSA was doing. After meeting Jenn and Deb, and learning about the mission of the organization, Dunyelle immediately knew it was something she wanted to be part of.
During her time working with LFSA, Dunyelle has been struck by the level of dedication and determination of the LFSA Board members. Although each of them have been touched in very personal ways by Li-Fraumeni Syndrome, they all come to the table with a firm commitment to helping others. There is a selflessness in all of them that is truly inspiring.
The work LFSA is doing is so important. The disease impacts so many families in profound ways, and LFSA is working hard to bring those families together to raise awareness, provide support, and fuel funding for Li-Fraumeni Syndrome research. Dunyelle is honored to be a part of LFSA.
Chief Executive Assistant to the President
Holly has lived and worked and played up and down the east coast. Though she has been in federal law enforcement for the past 25 years, she remains interested in her earlier academic pursuits, to include issues related to public health, access to health care, and cancer research. She attended the Li-Fraumeni Syndrome Conference and Workshop held in Boston, MA, in 2013, and is thrilled and honored to now be a part of the LFSA.