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.
Katie Stevens has been with Team Telomere since 2014. Katie lives in Hayden, Idaho with her husband, Josh, and their four children. Their oldest child, Riley, was diagnosed with Aplastic Anemia when he was 11. Three months after ATG treatment his telomere lengths were tested. They came back at less than 1%. Katie and her son Riley moved to Boston in July 2015 so that Riley could undergo a stem cell transplant using a protocol written for patients with shortened telomeres. Katie’s goal is to be an advocate and resource not only for the TBD/DC community, but also to the greater rare disease community. In addition to leading Team Telomere, Katie serves as the Patient Engagement and Advocacy Liaison to the Clinical Care Consortium for Telomere-associated Ailments (CCCTAA), a Global Genes RARE Foundation Leadership Alliance Adviser, and is an active NORD Member Leader.
“You can’t do anything about the length of your life, but you can do something about its width and depth.”
Assistant to the Executive Director & Graphic Designer
Haley is our dedicated Graphic Designer and the Assistant of the Executive Director. She’s a proud native of Minnesota and graduated with her Bachelors in Creative Arts and Graphic Design at Metropolitan State University. In her free time, she likes to cuddle with her two dogs, try new recipes with her husband, and spend time with her family. Her strong sense of intuition, creativity, and her ability to appreciate the little things in life is what got her interested in design. Her job at Team Telomere as the Graphic Designer encompasses all the those qualities to create beautiful designs for a community that matters!
President & Chair of Legacy
Colleen lives in Northern California and started to become involved with Team Telomere in 2017, with a particular interest in the Legacy group for bereaved parents, but also has had the privilege of being part of the Care Package program for those newly diagnosed. In September 2019, she stepped up as President of the Board of Directors. Colleen is a mother to two precious boys, Ryan and Tyler, who fought bravely during their short time here on earth. Both boys were diagnosed at a very young age with Dyskeratosis Congenita (Hoyeraal-Hreidarsson syndrome). Tyler passed away in 2007 at the age of 2 1/2 after complications from his BMT. Ryan had a successful BMT in 2013, but passed away in 2017 at the age of 14 after serious lung complications presented. While she will always live with a broken heart, Colleen has chosen to honor her boys by connecting with others in the TBD/DC community and walking alongside those who are bravely battling.
Colleen’s hobbies/interests include gardening, tending to animals both large and small, teaching piano lessons, leading a 4H project, reading to children, and enjoying flying adventures with her husband on weekends. Staying active and choosing to be surrounded by children and animals and airplanes helps her find joy in each day, however her passion for Team Telomere and fighting against this disease is what continues to give her meaning and purpose.
Kendall is a driven health advocacy professional with strong community outreach, patient association, health care provider, rare disease and chronic illness expertise. Kendall Davis recently joined the Rare Disease Center of Excellence at PRA Health Science to ensure that the patient voice is not only heard but considered and utilized in the clinical research lifecycle. Kendall previously served as the Director of Strategic Alliances at Global Genes, a leading rare disease patient advocacy organization and has held key roles in patient advocacy and patient education in both the nonprofit and biopharmaceutical industries. Kendall’s passion is to improve the health outcomes of individuals living with rare diseases while creating strategic advocacy and awareness campaigns in the rare diseases space. Kendall specializes in cultivating partnerships with patient advocacy organizations, identifying and partnering with Key Opinion and Community Leaders, identifying key business needs, developing customized programs to achieve key outcomes and balancing a global focus with national, regional and local patient centric partnerships. Kendall works with leaders in the rare disease nonprofit community and biotechnology space to advance progress in the rare disease community.
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.
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 Sunshine in 2016 and has been an avid supporter since. He lives in New York City and is an ETF Strategist for QQQ at Invesco. He has an extensive background in finance, having a BA in Economics from Johns Hopkins University and a long working history with OppenheimerFunds, Merrill Lynch and Morgan Stanley. When he’s not working, Ryan enjoys spending time outdoors: skiing, playing sports and hiking. He also enjoys traveling and spending time with his family on Long Island.
Chair of Communications Committee & Board Member
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.
Nicole lives in southern Minnesota has been a part of the DC community since the very beginning in 2008. She has been married to Logan for 24 years. She has two children, Rilee and Jordyn, and came to this community because of her daughter Rilee. Rilee was affected by DC and had a successful BMT in 2003 at the age of 3. In 2015 she started having lung, liver, and GI issues. Ultimately, GI bleeding took her life in March of 2017 at the age of 17. Rilee’s creativity has inspired Nicole to put her whole heart into the community. She comes with much knowledge and personal experience and brings her heart and passion with her. She has already been giving her time behind the scenes for the last few years and looks forward to serving our rare community in a leadership role.
Board Member & Chair of Outreach Committee
Jeni Colter was previously a member of Team Telomere’s Outreach committee before joining the board in September 2019. Her daughter, Megan, now 18, was diagnosed in 2016 through genetic testing revealing a novel variant on the TERT gene as well as very short telomeres. Jeni was later found to have the same variant and very short telomeres. Their family attended Camp Sunshine in 2016 and fell in love with the DC Outreach/Team Telomere community. Jeni was diagnosed at 19 with Multiple Sclerosis, giving her many years of practice navigating the many aspects of life with a chronic illness.
Her professional background is in early childhood education. She taught preschool for 15 years before leaving her position last year. She happily lives in Laramie, Wyoming enjoying the beauty of the mountains. She has been happily married for 27 years to Dr. Rob Colter, Ph.D., a faculty member in the Department of Philosophy and Religious Studies at the University of Wyoming, In addition to Megan, she has a son Jackson, 25, who is completing his master’s degree in Philosophy at Colorado State University. In addition to their human children, they have two spoiled rotten dogs, Athena and Gus. One of her goals while serving on the board is to broaden the resources available to the young adult population living with DC.
Eric Villeneuve joined Team Telomere in 2018 and currently resides in Durham, North Carolina. He
Allison Kiene joined the board of Team Telomere in October 2019. Allison is from South Windsor, Connecticut and currently resides in Somers, New York. She has two children, Tim (28) and Caitlin (24). In 2005, Allison’s two brothers, Robert and Richard, were diagnosed with aplastic anemia secondary to Dyskeratosis Congenita and genetic testing revealed that Allison and her mom were both carriers of the disease. Robert and Richard received stem cell transplants under the care of Dr. Joseph Antin and Dana-Farber Cancer Institute. At the time, there were very few resources available to the family and limited understanding of the disease and what would come next. Initially, it appeared that Robert was “cured” only to learn shortly after the transplant that he had Pulmonary Fibrosis. In 2008, at the age of 36, Robert succumbed to the disease. Richard would carry-on earning his doctorate in organic chemistry, marrying his best friend (Ashley) and beginning his career as a college professor. Richard lived life to its fullest fighting each obstacle the disease put before him. In 2015, both Allison’s mom (71) and Richard (36) passed away from Pulmonary Fibrosis.
Allison became a member of the Team Telomere community because she values and understands first-hand the need to support families battling Dyskeratosis Congenita and related diseases. Allison serves as Senior Vice President, Assistant General Counsel and Chief Compliance Officer for Sompo International, a global property and casualty insurance and reinsurance company. Allison is admitted to the Bar in Connecticut, Massachusetts and New York and holds pharmacy licenses in Connecticut and New York.
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
MD, PhD, Chair of Medical Advisory Board & Board Member
Sharon A. Savage
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.
MD, PhD & Board Member
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.
Dr. Mrinal Patnaik is an Associate Professor of Internal Medicine at the Mayo Clinic, Division of Hematology, in Rochester, Minnesota. He is affiliated with the Myeloid Malignancies group and is the director of the precision genomics practice. He is the co-director of the Epigenetics Developmental Laboratory and an executive member for the Beyond DNA committee, a major directive of the Center for Individualized Medicine. He obtained his medical degree from the Grant Medical College in Mumbai and then did his Internal Medicine residency at the University of Minnesota. He then completed a fellowship in Hematology, Oncology and BMT at the Mayo Clinic and has been a faculty member ever since. He has a strong interest in bone marrow failure syndromes and in 2017, with the help of the Division of Hematology and the Center for Individualized Medicine, he launched the program for excellence for Telomere Biology Disorders. This is a multidisciplinary clinical and laboratory effort being carried out to assess and provide comprehensive care to patients with Telomere Biology Disorders, including Dyskeratosis Congenita. His research interests include assessing for clonal hematopoiesis in Telomere Biology Disorders, epigenetic regulation of telomere length and the development of clinical trials for patients with Telomere Biology Disorders.
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
O Dr. Calado é Professor Associado de Medicina da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo (USP) e Pesquisador Principal do Centro de Terapia Celular da USP. Trabalhou anteriormente na Divisão de Hematologia do Instituto Nacional do Coração, Pulmão e Sangue dos Institutos Nacionais de Saúde dos Estados Unidos da América. É especializado no diagnóstico e tratamento de falências da medula óssea, como a anemia aplástica, doenças dos telômeros e no estudo da biologia das células-tronco hematopoéticas.
El Dr. Calado es Profesor Asociado de Medicina de la Facultad de Medicina de Ribeirão Preto de la Universidad de São Paulo (USP) e Investigador Principal del Centro de Terapia Celular de la USP. Trabajó anteriormente en la División de Hematología del Instituto Nacional del Corazón, Pulmón y Sangre de los Institutos Nacionales de Salud de los Estados Unidos de América. Es especialista en el diagnóstico y tratamiento de falencias de la médula ósea, como la anemia aplástica, enfermedades de los telómeros y en el estudio de la biología de las células madre hematopoyéticas.
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
Spain Global Ambassador
Rosario Perona Abellón es profesor de Investigación del Consejo Superior de Investigaciones Cientificas. Actualmente es jefe de grupo en el Instituto de Investigaciones Biomédicas (CSIC/UAM) y dirige el grupo de Enfermedades con defectos en telómeros U757 en el CIBER de enfermedades raras (CIBERER). Su grupo esta especializado en el estudio genético de pacientes con disqueratosis congenita y fibrosis pulmonar idiopática y es el grupo de referencia en España para el estudio de ambas enfermedades. Actualmente tambien trabaja en el desarrollo de una terapia de reactivación de telomerasa basada en la actividad del péptido GSE4.
Rosario Perona Abellón é Professor do Investigação do Conselho Superior de Investigações Científicas. Atualmente é líder do grupo no Instituto de Investigações Biomédicas (CSIC / UAM) e dirige o grupo de doenças com defeitos nos telômeros U757 no CIBER de doenças raras (CIBERER). Seu grupo é especializado no estudo genético de pacientes com disqueratose congênita e fibrose pulmonar idiopática e é o grupo de referência para o estudo de ambas as doenças. Atualmente, ele também está trabalhando no desenvolvimento de uma terapia de reativação da telomerase para ambas as doenças com base na atividade de um peptídeo GSE4.