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!

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.

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.

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 possess a Master’s in Public Health from the University of Pennsylvania and during his graduate program, Eric became involved with Team Telomere while participating as a member of a student led healthcare consulting firm. He works for RTI International as a social science researcher in the Center for Youth, Violence Prevention and Community Justice. His skillset brings a unique approach to criminal justice research by incorporating a public health approach to complex criminal justice problems. He plans to use the expertise gained during his multiple experiences to enhance patient outreach and assistance to better the lives of those suffering with telomere biology disorders.

Tara is married to her husband, Jason. They have two children: Celtan (age 9) and Elizabeth (age 6). Tara and her family live in Chicora, Pennsylvania. In their spare time, Tara and Jason enjoy taking their children on road trips around the U.S.

Tara has been a member of the Team Telomere community since her daughter, Elizabeth, was diagnosed with shortened telomeres in 2017. Elizabeth is now 6 years old, and although shortened telomeres were confirmed via genetic testing, there has been no known genetic mutation for Telomere Biology Disorders discovered in Elizabeth’s genome. Elizabeth also has another rare syndrome, ZTTK Syndrome, and she was among the first in the world diagnosed with the syndrome in 2015. Since Elizabeth’s diagnosis in 2015 with ZTTK Syndrome, Tara has become a rare disease advocate that is driven to change the landscape of rare disease for both patients and families. She is an admin for her daughter’s ZTTK Syndrome family support group, the ZTTK SONshine Foundation. Tara is also a Foundation Alliance member of Global Genes, and she has experience working directly with rare disease researchers and families worldwide. Tara has coauthored both an abstract and an article on ZTTK Syndrome with researchers. Tara also has a diverse educational background and has a Bachelor of Arts degree from The Pennsylvania State University in Psychology, with a minor in History. Tara also has two graduate degrees: A Master of Arts degree from The Indiana University of Pennsylvania in Sociology, with a focus in Social Policy and Human Services; and a Master of Education Degree from Slippery Rock University of Pennsylvania, with a certification in Secondary Education for both English Language Arts and Social Studies. 

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.

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.

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 Hoyerall-Hreidarsson Syndrome.

Being so rare, I dove head first into study to understand it all as best as I could, considering all of our doctors had barely (some never) heard about DC or HHS before. I felt I had to understand it all, incase they didn’t – for my sons sake!

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 effected by TBD/DC.
I am passionate about getting the global awareness needed to fund more research into telomere studies and find our warriors a cure!

I am looking forward to working with fellow UK families and letting them know they are never alone in this journey.

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.

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.