Jenn is married to her best friend and love of her life, Bert, and has two wonderful daughters, Samantha and Lexi. Jenn currently works with Dunkin’ Donuts Brand serving as an Operations Manager. 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, one of them, Hoofin’ For The Cure, involved her horse Maximus.
Jenn is a breast cancer survivor who was diagnosed with Li-Fraumeni syndrome just a few years back. 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
Holly Fraumeni, M.S.W.
Vice President and Chief Executive Assistant to the President
Holly is a retired supervisory special agent with the US Secret Service who feels very fortunate to come full circle and be able return to her interest in cancer epidemiology and prevention, access to health care, multidisciplinary support systems, and health education through volunteering with the LFS Association. And though she does not have Li-Fraumeni syndrome, she has had cancer and cancer has stolen many of her loved ones.
Marketing and Development Chair/Co-Founder
Having held both non-profit and senior corporate management positions for over 25 years, she is passionate about propelling the science and advancing the understanding of LFS, which will bring the LFS patient community better diagnostic tools for early detection and treatment plans and to ultimately support LFS families through their journey. She loves being on the LFSA team. “We are game changers for those living with LFS. I will not rest until I leave this world a better place for those living with Li-Fraumeni syndrome.”
In 2010, two of Deb’s sisters tested positive for Li-Fraumeni and Deb tested negative. “I can’t begin to describe to you how I felt. While I was waiting for my test results, the annual Li-Fraumeni syndrome 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.”
Marketing and Development Co-chair
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.
“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 has the potential to have great impact on people’s lives by facilitating LFS research, patient support and the sharing of information.”
Robert Lufkin, D.O.
Medical & Scientific 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 cross-country skiing together. Rob also spends time cycling and finds solace and tranquility in the garden.
Rob’s 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.”
Dunyelle lives in the Boston area with her husband, 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 and Deb, 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 the LFS Association.
More to come…
Michele lives in Massachusetts with her husband, Vincent, and their three great children. Vincent, 23, will graduate this year and start his career in Sports Marketing in California. Stephanie, 21, is a junior at University of Massachusetts Amherst, studying dual majors, Psychology and Kinesiology, and Anthony, 21, is a junior at Hobart William Smith Colleges, studying Physics. Michele currently works with Kala Pharmaceuticals serving as their Director of Accounting. Michele first heard about Li-Fraumeni syndrome from her friend Deb Soprano, who worked with Michele. She has over 30 years in finance with various pharmaceutical or biotech firms. Being affected by cancer in her family she raised her hand to help when the organization needed a Treasurer.
Michele enjoys many activities such as spending time on Cape Cod with family and friends, running two marathons and most recent competitive masters rowing.
Michele is honored to serve as a board member for this association.
Education and Outreach Liaison/Board Member
Kathy first became aware of LFSA in 2015 after the passing of her second daughter from LFS. She started raising money for research and awareness in 2014 and found LFSA in 2015, in time to donate the proceeds of their 2nd fundraiser to the Li-Fraumeni Syndrome Association. She felt at home immediately with LFSA and knew right away that this is where she needed to put her energy for LFS awareness. Kathy was a stay at home mom from 1982, running her husband’s business from her home office. “I am thrilled to have been invited in 2017 to be on the board for LFSA! This organization is so dedicated to helping the LFS community and I am very honored to be a part of that effort. I will do my best to represent this organization and help spread the word about LFS and help raise money for research and the families affected by this disease.”
Sean Downing, Ph.D.
Sean lives north of Boston with his wife and their daughter and chocolate lab. While a native Bostonian, Sean spent years in Australia where he earned his PhD in Medicine/Cancer Genetics. Before returning to Boston, Sean obtained Australian citizenship and is now a dual citizen of Australia and the USA. Sean is an avid bass fisherman. While not afflicted with LFS, Sean has lost family members to cancer, most notably his father to lung cancer and his mother-in-law to colon cancer.
During his scientific career, Sean has spent over 10 years researching the p53 gene. His work examined the role of p53 in mammary gland development with possible links to breast cancer and how prostate cancer specific mutations in p53 lead to advanced disease. His more recent work has focused on biomarkers of cancer, the develop of genomic tests for cancer, and immuno-oncology. “I am honored to serve as an LFSA board member and to give back in such a meaningful way.”
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 Institutes 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 – Memorial
John Berkeley was a happily married, proud father of delightful fraternal twins. He lived in Bellingham, Massachusetts, where he enjoyed spending time with family and friends, golfing and riding motorcycles. With over 25 years in the telecommunications industry, John reflected also on his longer lifetime success as a childhood and adult cancer survivor. Having been diagnosed with rhabdomyosarcoma at age 5 and myofibroblastic sarcoma at age 42, he had been a patient of the Dana-Farber Cancer Institute for over 40 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 Institutes 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 was 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 said, “It is important to me that those diagnosed with LFS and their families have a place to go for support and information.” His goal remained to increase LFS awareness worldwide and collaborate with the medical communities to encourage increased research aimed at the understanding of Li-Fraumeni syndrome.