Mission & Vision

Katie Stevens has been with Team Telomere since 2013. Katie lives in Northern Idaho with her husband, Josh, and their four children. Their oldest child 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 moved to Boston in July 2015 so that he could undergo a stem cell transplant using a protocol written for patients with short telomeres.

In 2017 she became the president of DCO, helping to change the name to what is now known as Team Telomere. She is now Team Telomere’s first full time employee. Her role as Executive Director has taken her all over the world, helping unite those living with telomere biology disorders via outreach and funding research. Her passion is to create collaboration amongst TBD researchers, and making sure the patient’s voice is heard first. She is published in an international peer-reviewed journal, Angiogenesis, and has presented abstracts at the Cold Spring Harbor, Telomeres & Telomerase conference and the European Molecular Biology Organization (EMBO) telomere conference and was the first ever patient advocate at the Transplantation and Cellular Therapy Meetings. Outside of telomeres, Katie loves collaborating with the greater rare community, believing firmly that though we are all unique all of our rare stories carry the roadmap that will lead to cures. Katie works on the Rare Foundation Leadership Council as well as on the Board of Directors for Global Genes. Katie is NORD member leader, and a 200 hour yoga teacher. Her passion for yoga and meditation has led to yet another avenue of service teaching to caregivers, patients and the bereaved in the rare disease community via Team Telomere and Move to Advocate. Katie is helping to launch the Embracing Uncertainty study where she is constructing an online mindfulness meditation program to manage medical uncertainty that will be appraised in collaboration with various patients and interdisciplinary researchers.

Katie’s team was recently awarded the Chan Zuckerberg Initiative Rare as One grant, which will help her organization create DEI focused efforts and COE. This will help her organization, and many rare disease organizations like hers, to serve all members of their community to the highest quality. Through Katie’s lead on these efforts, she hopes to expand the capacity and reach of her organization to pave the way for the rare disease communities to move forward toward accessible and equitable diagnostics, treatments and cures.

“You can’t do anything about the length of your life, but you can do something about its width and depth.”

In her free time, she enjoys playing the piano and spending time with her family and friends. Hannah received her Bachelor’s Degree in Neuroscience in 2021 from the University of Illinois at Chicago, and she hopes to continue her education by pursuing a medical degree.

Kristi Rietze is passionate about ensuring kids and families have access to resources to help them lead their very best lives. A community servant with over twenty years leadership experience in the nonprofit, education, & youth development sectors, Kristi truly enjoys sharing stories to connect hearts and resources with mission and purpose. With a degree in Child & Family Studies and an entire professional career dedicated to nonprofit development, marketing, and planning, Kristi is excited to join Team Telomere and help make an impact for families, researchers and advocates across the globe affected by telomere biology disorders.

True to her northern Idaho roots, Kristi enjoys snow and water sports, cooking, and being on the sidelines watching her kids compete in soccer, basketball, and distance running. Always up for an adventure, she loves to travel and is a big fan of road trips and live music. Married to her college sweetheart, Kristi’s proudest accomplishment is being mom to Myah, Elliana, Mitchell, and Audrey.

Kelly VanDewerker lives in beautiful Hayden Lake, Idaho with her two kids, Parks and Seeley, and her husband, Ryan. Kelly worked in the hospitality industry for the past 16 years and believes each role she has had in life, both professionally, as well as through friendships and community, brought her to this position. She is devoted to advocate and serve Team Telomere’s mission, and committed to constantly learn in order to support families and further the research for those affected by Dyskeratosis Congenita and Telomere Biology disorders. In her spare time she loves to sit on the dock with her favorite people, boat, and watch her kids play for hours in the water. In the winter months you will find her cozied up around a big bonfire with a glass of wine and a s’more. Kelly received her Bachelor’s Degree in Communications from the University of Montana, and always looks forward to a trip back to Missoula for Griz football.

Heather Kagel lives in Dallas Texas and has been engage with Team Telomere since 2018. Heather has a TERC gene mutation and short telomeres. She was diagnosed with Idiopathic Pulmonary Fibrosis in 2013 and Oral Squamous Cell Carcinoma in 2016. Thanks to a wonderful organ donor, she recently received a double lung transplant! Heather brings her personal experience and a passion for more education and raising awareness of these telomere biology disorders and their accompanying diseases.

Heather lives with her husband Rick and their shih-tzu Huckleberry. Her two children, Mitchell (23) and Samantha (22) are living away from home but continue to be amazing care partners and supporters. Heather enjoys travelling (especially to the beach!!), baking, and paper crafts.

Bruce has served on Team Telomere’s board or as a volunteer since 2010.  He and his family first learned of telomere disorders and more specifically, Dyskeratosis Congenita when their oldest son, Josh was diagnosed in 2004. Josh was eight years old when diagnosed and despite having limited treatment options and many physical and cognitive challenges, he thrived throughout his life until succumbing to this disease in 2011.  This experience has moved Bruce both professionally and personally as he has worked in the nonprofit sector for the past decade and  continues to partner with other rare disease organizations.  Bruce is the SVP of Finance and Controllership at United Way Worldwide.  He has held a number of finance leadership roles in higher education as well as for-profit utility and consumer service industries.  Bruce has been a part of the Philadelphia area finance community for the past 30+ years.  He lives in West Chester, PA with his wife, Pattie and their two young-adult children, Noah and Katie as well as their 70-pound Pit-Lab, Murry.  He enjoys his family, Philly sports and biking many miles each year and has been an active member of the University of Pennsylvania’s Orphan Disease Center Million Dollar Bike Ride, starting Team Josh & the DCO Riders (now Team Telomere) in 2014.

Bruce holds an Bachelors and MBA from Drexel University as well as a Masters in Organizational Dynamics from the University of Pennsylvania.  He has been a licensed CPA since 1992 and is a certified executive coach and organizational consultant.

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.

Kendall is a driven health advocacy professional with strong community outreach, patient association, health care provider, rare disease, and chronic illness expertise. She holds a Master’s Degree in Public Health from Michigan State University as well as a Bachelor of Science in Psychology from Loyola University, Chicago. Kendall Davis currently serves as the Early Development- Patient Advocacy Lead at Spark Therapeutics, a rare disease gene therapy company. Kendall has previously held the role of Patient Advocacy Strategy Lead at PRA Health Science where she ensures that the patient is a part of the clinical research lifecycle and Director of Strategic Alliances at Global Genes, a leading rare disease patient advocacy organization. Kendall has also held key roles in patient advocacy and education in the nonprofit and biotech 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 & biotechnology space to advance progress in the rare disease community.

Lisa Benincosa received her PhD in Pharmaceutics from University at Buffalo and Bachelor’s degree in Pharmacy from West Virginia University. She has spent her career in Pharma R&D in senior executive leadership roles such as SVP Head Translational Medicine, VP Clinical Pharmacology and VP DMPK and Bioanalytics. She has experience in research and development across therapeutic areas including rare diseases. Lisa serves on academic leadership councils and is a
Board Member of the American Society of Clinical Pharmacology & Therapeutics. She has received leadership and distinguished alumni awards throughout her career.
She resides in Saint Augustine Florida.

Parvathy Krishnan is CEO and Founder at the Krishnan Family Foundation, a 501(c)(3) healthcare advocacy organization. She began her efforts in advocacy and awareness after both her children were with multiple ultra and nano rare genetic conditions. Parvathy is an accomplished speaker and has spoken at various conferences, workshops and events engaging various stakeholders across the Rare Disease Landscape. Parvathy is passionate about empowering others through advocacy, patient-family engagement, and collaborating with various stakeholders to bridge the gap.

Parvathy serves on advisory councils as a leader across various institutions and organizations around the world. She is a Subject Matter Expert on patient and family centered care, surgical oncology family experiences, palliative/complex care and nano rare clinical trial patient experiences. Parvathy also serves as a Community Congress member providing insights on urgent policy initiatives.

Parvathy has a Masters in Clinical Nutrition with professional experience in Clinical Care as a Nutrition Support Dietitian. Parvathy has a unique blend of experiences that drives her passion and commitment towards Rare Disease Advocacy. Her educational and work experiences from clinical care combined with her personal lived experiences as a Rare Caregiver continues to steward her work. She lives in North Carolina.

Abbey Hauser is a young adult rare disease advocate and patient. Abbey started advocating for rare disease, disability, and chronic illness after starting their blog, Owning My Story, in early 2017 once their previously mild condition progressed to impact more of their daily life. Since then she has found a passion for policy advocacy and joined the EveryLife Foundation for Rare Diseases Board of Directors and is an active member of their Young Adult Rare Representatives (YARR) advocacy program. Abbey is excited about Team Telomere’s passion for community and drive to move the science forward for Telomere Biology Disorders. They are also passionate about helping patients and families find strength and confidence in their stories to become powerful advocates.

Abbey has met with lawmakers on Capitol Hill multiple times, served as a consumer review for the Congressionally Directed Medical Research Programs (CDMRP) and has spoken at various events and webinars for rare disease and adaptive sports advocacy. In their down time, Abbey is an avid reader, an outdoor enthusiast and a collector of quotes.

Dr. Sharon A. Savage is the Chief of the Clinical Genetics Branch in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute (NCI). She leads clinical, genetic, and epidemiologic studies of individuals and families at high risk of cancer. Her comprehensive approach 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. Kasiani Myers is an Associate Professor of Pediatrics at the University of Cincinnati and Cincinnati Children’s Hospital Medical Center and Director of the Hematopoietic Stem Cell Transplant Late effects and Survivorship Program. Dr. Myers focuses her clinical efforts with patients with bone marrow failure disorders including telomere biology disorders and her research in translational studies in leukemogenesis, bone marrow failure, and acute complications and late effects following hematopoietic stem cell transplant (HSCT). She is the Principal Investigator for the industry sponsored clinical trial for evaluation of telomere elongation with EXG34217 in patients with Telomere Biology Disorders with bone marrow failure (NCT04211714).

Also as part of these research efforts Dr. Myers is a member of the Clinical Care Consortium for Telomere Associated Ailments, she co-directs the North American SDS registry and the Cincinnati Children’s Hematopoietic stem cell and Bone Marrow Failure Repositories, as well as site Principal investigator for numerous international collaborative marrow failure studies including Dr. Suneet Agarwal’s multi-center study investigating radiation- and alkylator-free conditioning for patients with Dyskeratosis Congenita.

He leads the Division of Pediatric GI, Hepatology & Nutrition and is Medical Director of the Pediatric Liver Transplant Program at Ochsner.

Desafortunadamente, después de muchos años Julian nunca encontró un partido perfecto y recientemente falleció. Mi meta aquí es poder ayudar a muchas familias.
Espero con interés aumentar la conciencia, proporcionar cualquier tipo de confianza, y les dejo saber que esta comunidad es familia. Cuando duele, a todos nos duele. Julian tenía un corazón muy amable y ayudar a los demás es todo lo que quería hacer también. Esta es mi manera de honrar a mi hijo, a través de todos ustedes.

___________________________________

Hello, I’m Mayra Garcia from Miami, Fl. I’m honored to be part of a mission very close to our family. The first day our son was diagnosed with DKC1, we searched endlessly for a perfect match to save his life. I joined Bethematch and Icla da Silva for the search. I held many bone marrow drives at colleges, and practically where-ever I could. I had no idea exactly how rare this disorder was and the difficulty of finding a match within the hispanic community. Along the way, I learned about DC while caring for my son. I also completed my BSN in nursing and it proved to be a plus during my son’s health issues. I visited many pediatric offices in Miami and only chose the best for him.

Unfortunately, after many years Julian never found a perfect match and recently passed away. My goal here is to be able to help many families struggling with this life long illness. I look forward to increasing awareness, providing any sort of confidence, and letting you know this community is family. When you hurt, we all hurt. Julian had a very kind heart and helping others is all he wanted to do too. This is my way of honoring my son, through you all.

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.

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!

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.

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.

Amy Pilon lives in Saskatchewan, Canada. She was diagnosed with Aplastic Anemia and underwent heart surgery in 2004 at the age of 7. Medical issues persisted and Amy spent many years doctoring off and on between Saskatchewan and Alberta before she was finally diagnosed with DC in 2012. There were very few resources available at the time as the disease was still quite new to medical professionals. DC is something that has effected generations of Amy’s family without their knowledge prior to her diagnosis, mainly in the form of Pulmonary Fibrosis. This has led Amy and her family to advocate strongly for organ donor awareness within Canada and worldwide through the creation of the Karen Pilon Organ Donor Awareness Foundation. In her spare time, Amy is a competitive 5-pin bowler, enjoys live music and is currently working towards her BBA, Marketing at the University of Regina. Amy would like to help anyone effected by a DC diagnosis as she understands the feelings of isolation that it can bring, especially in children. Please feel free to contact Amy anytime.

Da Dicembre 2019 è membro del Scientific Committee of the American Society of Hematology.

Nel 2015 ha ricevuto dal Fanconi Anemia Research Fund. INC (FARF) il Discovery Award per la partecipazione all’identificazione del gene FANCT.

Nel dicembre 2019 gli è stato riconosciuto il premio per il contributo scientifico nel campo dell’Anemia di Fanconi dalla spagnola “Fundacion en la Anemia de Fanconi”.

A inizio 2020 è stato premiato dalla European Society of Blood and Marrow Transplantation (EBMT) con il Premio Van Bekkum, riconoscimento riservato al miglior contributo scientifico dell’anno, per lo studio prospettico randomizzato RACE (Confronto fra Immunosoppressione classica ± Eltombopag) nei pazienti con anemia aplastica grave.

Hugo est né à 6 mois et 10 jours, il a fait un AVC à la naissance, il a une hémiplégie, durant des années il a eu beaucoup de problèmes de santé sans que l’on sache de quoi il souffrait exactement, les hospitalisations se sont rapprochées de plus en plus, puis l’année de ses 13 ans il a passé pratiquement à l’hôpital, c’est là qu’un médecin a décidé pendant son hospitalisation de faire des examens génétiques et le diagnostic est tombé, Hugo était atteint d’une dyskératose congénitale avec une aplasie médullaire et une atteinte du foie, j’ai été diagnostiquée dyskératose congénital avec une petite aplasie médullaire et une fibrose pulmonaire.

Suite au diagnostic, nous avons eu envie de nous rapprocher d’une association, mais malheureusement celle qui existait en France ne fonctionnait plus, nous nous sentons isolés, mais heureusement nous avons trouvé beaucoup de réponses sur le site et les réseaux sociaux de la TEAM TELOMERE, c’est de là qu’est venu mon envie de créer une association française de dyskératose congénitale TELOMERO ASSO qui a pour but de faire connaître la maladie, aider les patients et leurs familles et enfin collecter des fonds pour aider la recherche.

Je suis très heureuse aujourd’hui de pouvoir rejoindre l’équipe TEAM TELOMERE en tant qu’ambassadrice région FRANCE.