Team Telomere, Inc.
A Community for Telomere Biology Disorders
Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.
President & Chair of Governance and Nomination Committee
Bruce has been involved with Team Telomere since 2010 as a parent and now as a Board member. He lives with his wife, Pattie and their two children Noah and Katie in West Chester, Pennsylvania. The Friedman’s lost their oldest son Josh to DC in 2011 at the age of seventeen. Since Josh’s passing, Bruce has worked with Team Telomere as a consultant as he assisted them with the development and implementation of their strategic plan. He has served as a Board member since 2017. In addition to working with Team Telomere, Bruce works as the Executive Director of Finance at The University of Pennsylvania’s Business Services Division, serves as a faculty assistant in Penn’s Organizational Dynamics program, works with other rare disease organizations as a coach and consultant and serves on the board of Bourenlyf Special Camp. He enjoys cycling, Philadelphia sports and spending time with his family.
John Marcone lives in Canton, MA with his wife, Susan and three children, Nicole, JC and Matty. He has been in the commercial roofing business in Boston for many years and serves on many roofing industry boards. He got involved with Team Telomere following the diagnosis of his son Matty five years ago and the passing of Susan’s brother. He has been involved in many fundraising events and looks forward to using his skills and experiences to benefit Team Telomere. He is an avid Boston sports fan, enjoys golf and playing hockey.
Emily Dziedzic lives in Portland, Maine and was elected to the board in December 2016. She moved into the Secretary role in December 2017 and is active with the #teamtelomere race team and the Development Committee. She is a licensed Private Pilot, with a Bachelor’s and Master’s degree in Aviation Management. After a 10 year career in the aviation industry, Emily left the field to pursue a career in wellness. She is currently a Licensed Massage Therapist and Craniosacral Therapist with her own practice in Portland, Maine. Emily has been volunteering at Camp Sunshine since 2001 and she fell in love with this community while volunteering during the 2014 and 2016 DC sessions at Camp. Eager to help support the mission of Team Telomere, she started by sending care packages and is now involved at the executive board level.
Ryan joined the board for Team Telomere in September 2018 and was elected into the Treasurer’s Seat in December 2018. Ryan was first introduced to the Team Telomere community through Camp
Steve Seifried comes to Team Telomere through a 20-year friendship with Bruce and Patty Friedman. Steve resides in the Philadelphia area with his wife Dawn and two college-age children Steven Jr. and Elizabeth. As a sales manager in the Pharmaceutical and Medical Device industries, Steve hopes to utilize his experience in these areas to continue to build upon Team Telomere’s fundraising achievements. He is excited to work with everyone in the Team Telomere community to support past successes and to develop and implement new fundraising opportunities as well as overall awareness of our mission. Other passions include Music, Pittsburgh Sports, Golf, and Fly-Fishing.
Board Member & Chair of Communications Committee
Dena Paffas joined the Team Telomere team in September of 2017 to help focus the communication initiatives of the organization. She received her Bachelor’s Degree in Speech and Communications from Millersville University in 2013, and is currently working on her Master’s Degree from the University of Pennsylvania in Organizational Dynamics. Dena works as the Faculty & Staff Coordinator at Penn Dental Medicine and enjoys both living and working in Philadelphia. She is an avid reader and enjoys spending free time with her family and friends.
Board Member & Chair of Outreach Committee
Eric Villeneuve joined Team Telomere in 2018 and currently resides in Durham, North Carolina. He
Kendall holds a Master’s Degree of Public Health from Michigan State University as well as a Bachelor’s of Science in Psychology from Loyola University, Chicago.
Board Member, Western Region Ambassador & Legacy Co-Chair
Attorney & Member of the Governance and Nomination Committee
Kevin, who grew up in Jacksonville, Florida, earned his Juris Doctor cum laude from Harvard Law School in 2013, where he served as a general board member of the Harvard Civil Rights-Civil Liberties Law Review and as a co-chair of the Mississippi Delta Project. In his free time, Kevin serves as the President of the Tampa Lawyer Chapter of the American Constitution Society, volunteers as a mentor at Lockhart Elementary Magnet School, and serves as a Commissioner with the Strong Families Commission. He also regularly publishes law review articles and op-eds on topics ranging from special education to the Fourth Amendment. Kevin’s background and experiences related to helping those with disabilities are a great asset to the DCO team.
Board of Medical Advisors
Sharon A. Savage
MD and Chair of Medical Advisory Board
combines genomics with clinical genetics and molecular biology to improve understanding of cancer etiology and the lives of patients with complex cancer-prone disorders. Dr. Savage leads the NCI’s clinical and genetic study of Li-Fraumeni syndrome (LFS), a highly penetrant cancer susceptibility
syndrome often caused by germline mutations in TP53, that is evaluating pediatric and adult cancer-screening regimens and studying the underlying molecular biology of LFS. Dr. Savage’s research program in telomere molecular epidemiology incorporates population-based studies of telomere length and disease with genetic studies of telomere biology. Dyskeratosis Congenita (DC), cancer-prone inherited bone marrow failure syndrome, is caused by germline mutations in telomere biology genes. To date, Dr. Savage has discovered four genetic causes of DC. This work has formed the basis for numerous basic science studies of the function of telomere biology genes. Her clinical studies of DC have led to improvements in the diagnosis of DC and seek to advance understanding of the clinical complications of DC and the related telomere biology disorders.
Dr. Olson’s career is dedicated to clinical care for patients with acquired and inherited bone marrow failure syndromes, and conducting basic, translational, and clinical research investigating disease mechanisms and methods to improve treatment for these patients. He is an Assistant Professor of Pediatrics at the University of Pennsylvania (UPENN), a Director of The Children’s Hospital of Philadelphia (CHOP)/UPENN Comprehensive BMF Center (CBMFC), and an Attending Physician in the Blood and Marrow Transplant Program at CHOP. He is a member of the Clinical Care Consortium for Telomere Associated Ailments and an Advisory Board member for Dyskeratosis Congenita Outreach, Inc. He is the primary Principal Investigator for two prospective institutionally supported clinical trials assessing novel approaches to conditioning and graft engineering for pediatric patients undergoing hematopoietic stem cell transplantation (HSCT) for BMF (NCT02928991 and NCT03047746). He is also site Principal Investigator at CHOP for several multi-institutional clinical HSCT trials, including Dr. Suneet Agarwal’s multi-center study investigating radiation- and alkylator-free conditioning for patients with Dyskeratosis Congenita.
His laboratory’s basic research is focused on using murine HSCT models to investigate molecular mechanisms governing hematopoietic stem cell engraftment within stem cell niches in the context of BMF, with the long-term goal of devising novel, less-toxic methods to ensure durable engraftment after HSCT. His translational research focus is investigating genetic and molecular pathogenesis, hematopoietic clonal evolution, and prognostic factors influencing the development of myelodysplasia and response to therapy in patients with acquired and inherited BMF. To support these efforts, he is Principal Investigator for the CHOP IRB-approved, BMF Patient Registry and Sample Repository, which contains a large collection of samples from over 600 pediatric and adult patients with BMF.
Rodrigo T. Calado
He is currently Scientific Director of the Ribeirao Preto Blood Bank, and Head of the Hematology Laboratory, University of Sao Paulo, Brazil.
F. Brad Johnson
Pacific Global Ambassador
Gabrielle (Gabby), was diagnosed with Dyskeratosis Congenita in January 2015. Gabby was born with IUGR and was always a sickly toddler and we were constantly at the doctors for something, although we never imagined that she had anything seriously wrong. On 19 November 2014 we took four-year-old Gabby to the doctor as she was bruising more and more easily, and her skin tone was yellow. After being tested initially for Leukaemia she was diagnosed at with Severe Aplastic Anaemia and we were told she would need a bone marrow transplant soon. The further diagnosis of Dyskeratosis Congenita followed six weeks after. Gabby has the TINF2 gene mutation and is considered to have a severe form of the disease.
Gabby had her bone marrow transplant just a few weeks after her fifth birthday, in July 2015 at Starship Children’s Hospital in Auckland, New Zealand. Her brother, Lachlan, was her bone marrow donor – he was just seven-years-old at the time.
Despite her many health and physical challenges Gabby is a very active girl who doesn’t let anything stop her from what she wants to do. She goes to school full time, loves going to Brownies (Girl Guides) and gym. She is extremely determined and has a real zest for life. She is a kid with spunk! For the most part we think we live a ‘normal’ life, or maybe we have forgotten what the real ‘normal’ is like.
I have received amazing support from DCO, even though we are on the other side of the world! I am extremely passionate about wanting to provide peer support to others in the Pacific region. So please don’t be shy and reach out to me at any time.
Pacific Global Ambassador
Hello, I’m Rachel Little from Queensland, Australia.
I have been a photographer and an early childhood educator, but my most passionate role is being a wife and mother of two boys. Cooper is our angel, watching over from above, and Grayson (1yo) is our warrior on earth, diagnosed with
Being so rare, I dove head first into
I was pleasantly surprised, and relieved, to find myself welcomed into the village of Team Telomere!
Grayson has two TERT gene mutations, one each passed on from myself and my husband, Leighton. We still can’t fathom the odds of us both having the same gene mutation, but I guess it means we were meant to be together! We are still unsure of the implications this will have on ourselves being a carrier, but for now our priority is getting Grayson through his Bone Marrow Transplant.
I am so excited to join Team Telomere to help spread awareness, fundraise for research and connect with families
I am passionate about getting the global awareness needed to fund more research into telomere studies and find our warriors a cure!
UK Global Ambassador
I am looking forward to working with fellow UK families and letting them know they are never alone in this journey.
UK Global Ambassador
Jacquie Roskell is from Lancashire in the north of England. She lives with her husband Shaun, son Woody (8), daughter Phoebe (5) & chocolate Labrador Denzel (3). Phoebe was diagnosed with DC in July 2017 after becoming unwell with bone marrow failure in May of the same year. Phoebe had a successful bone marrow transplant at The Royal Manchester Children’s Hospital in December and her brother Woody was her donor.
Jacquie contacted Team Telomere soon after Phoebe’s diagnosis after a google and Facebook search. Jacquie says ‘it quickly became apparent that the specialist knowledge of this rare disease wasn’t available to us and after being given the news we were left feeling isolated and alone’. Jacquie’s mission is to ensure no one in the U.K. ever has to feel like she and her husband did after Phoebe’s diagnosis.
Dr. Rodrigo T. Calado
South America Medical Advisor
MD, German Medical Advisor
Seine Ausbildung zum Kinderonkologen erhielt Herr Prof. Kratz an der Albert-Ludwigs-Universität Freiburg, wo er habilitierte und zum Oberarzt ernannt wurde. Es folgten Tätigkeiten in Wellington, Neuseeland und am National Cancer Instistute in Bethesda, Maryland, USA. Im Jahre 2012 erhielt er den Ruf auf die W3-Professur für Pädiatrische Hämatologie und Onkologie an der MHH. Sein Forschungsschwerpunkt liegt im Bereich der Erforschung von Krebsursachen bei Kindern. Insbesondere setzt er sich in seinen klinischen Tätigkeiten und auch in seiner Forschung für Menschen mit einem erhöhten Krebsrisiko ein, wie für Menschen mit Dyskeratosis congenita.
Canada Global Ambassador