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 Sunhine in 2016 and has been an avid supporter since. He lives in New York City and is an EFT Specialist for OppenheimerFunds. He has an extensive background in finances, having a BA in Economics from Johns Hopkins University and a long working history with Merrill Lynch. When he’s not working, Ryan enjoys traveling, hiking, skiing, and spending time with his family on Long Island.  

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.

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.

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.

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.

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.