Team Telomere, Inc.

Team Telomere has played an integral role in my family’s lives. Through Team Telomere my daughter and son-in-law found Camp Sunshine, Dr. Suneet Agarwal and a cure for our grandson. Team Telomere not only provided a light at the end of a tunnel, it opened up the entire world to my daughter. She has formed life long friends with other mothers fighting for their children. I, as her mother, could not be more grateful for the hard work Team Telomere does to advocate for patients and families, the fundraising they do to help move science forward, the scholarships given and the tireless hours they work to continue to expand their reach.
I am grateful for and proud of Team Telomere!

We found this community a few years back when learning of this challenging and scary diagnosis. It has been pivotal in managing this journey. This organization provides emotional support, a sense of community, medical and research information, and keeps you connected with the best doctors. We never feel alone and are grateful each and every day for all the personal and professional connections, it’s been our lifeline.

Team Telomere provides assistance from the most basic ways like care packages to Herculean endeavors like funding rare disease research and amplifying the limited funding that exists. The biggest benefit though may be the way TT makes connections that literally save lives. I’m proud to be a sustaining supporter.

I became a part of this community after volunteering at a Camp session with patients. I am now a part of a devoted and passionate organization that goes above and beyond for the families it serves. Continuing to build community in the rare world of telomere biology disorders.

Patients and families with dyskeratosis congenita / telomere biology disorders often experience the fear and isolation of a rare disease diagnosis. For more than a decade, Team Telomere has provided information, hope, and a community for patients and families facing DC/TBDs. They have achieved this through tireless patient advocacy and support; connecting families, physicians, and researcher; funding research; building awareness and knowledge, including comprehensive clinical guidelines and international meetings; collaborating on clinical research projects; and numerous other initiatives. Team Telomere has the passion of a grassroots patient-driven organization, with highly effective leadership and execution. As a physician/researcher in this field, it is a privilege to work with Team Telomere - they are truly improving outcomes and saving lives.

Our daughter was diagnosed with Dykeratosis Congenita at age 4. The sense of community we feel through our connection with Team Telomere has been nothing short of amazing. We live in New Zealand where there is only one or two others with this diagnosis. We have made the trip to the US twice now to attend Team Telomere Family Education Summit at Camp Sunshine where our daughter (now 10) has been able to meet with other children with the same diagnosis. The friendships and continuous support through family chats and online forums is what gets our family through what would otherwise be a very lonely and isolating journey. The sense of belonging that our whole family has felt when we meet with other Team Telomere families is incredible. Team Telomere also helped to facilitate for our daughter to be seen at Boston Children's Hospital where she received laser eye surgery that we couldn't have done back home in NZ. None of this would have been possible without the support of Team Telomere.

Team telemere has made a huge impact on our lives. When my husband was diagnosed with DC we knew nothing about it. We came across team telemere and had so much information shared with us as well as hope for a cure through research. Because of this amazing non-profit we have met other families dealing with the same issues and or disease and made friends for life. Team telemere is a true blessing in the rare community.

An absolute gem in the rare disease world. An organization whose passion for Telomere research and genuine compassion for individuals with TBD’s collide in a most beautiful way as we battle each and every day against a horrific disease. I am both a client served and a board member, and am so very proud to work alongside the Executive Director and with the support of an excellent Board of Directors.

Team Telomere is such an amazing advocacy and support group for families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders! I especially love how they collaborate with and learn from others in the rare disease community!

What I love so much about Team Telomere is, Katie Stevens! Learning about her story and what brought her to the organization really touched me as a mom to a rare disease kiddo. I love knowing there are real patients and advocates behind organizations and putting a face to their mission. You do not need to share a diagnosis to connect and collaborate and Team Telomere is great at it!

An amazing organization. They do it all. Patient support, grants funding research, connecting patients with physicians. Education opportunities, and on and on.
It’s a mighty group advocating for a very rare disease.

Team Telomere are always there to support patients and their families not only emotionalyl but with medical insight and recommendations. They are always striving to find new ways to help patients be it through fund raising, bringing our small community together or raising the profile of teleport biology disorders throughout the medical community.

My son was diagnosed with Dyskeratosis Congenita in December 2018. I was devastated and scared! I joined a support group for my son's rare disorder on facebook. The support grouo is where I learned about Team Telomere! They were very supportive right from the very beginning! They sent my son a care package, which he took with him to hospital for his bone marrow transplant. The blanket they made and put in care package is now his favorite! They continue to offer support! I don't know what I would do without Team Telomere!

Team Telomere has been am amazing source of information and inspiration. They have assisted me in finding the right medical staff to treat my son since a very difficult rare diagnosis. They have welcomed us as part of the "rare" family with open arms.

The charity Team Telomere means the absolute world to our family. Our beautiful daughter was diagnosed with Dyskeratosis Congenita 2 years ago. It is an incredibly lonely disease as it is so rare but this charity brings families together. They support, encourage, advocate and care about us all. They are committed to finding a cure for this awful disease and I really don’t know where we would be without them.
The executive director Katie Stevens is a remarkable women who is literally moving mountains for this charity and the families effected. She is amazing.

Team Telomere, Inc. has been our family’s support in many ways, since my son’s diagnosis in 2016. We truly would have been lost with out them.

Team Telomere is an amazing help to patients, patient advocates and the entire medical community. They help families make connections to physicians who specialize in the myriad of different symptoms that present with diseases of the telomere. They connect physicians who are not as knowledgeable to specialists who can give advice or suggest options. They provide hope, advice, loving care, suggestions, options, connections and solutions for patients and patient advocates for the life threatening symptoms and the everyday worries and struggles that come with having a rare disease. They are truly deserving of the 2019 top rated non-profit award! Diane O'Mara

Meeting team telomere this year was amazing. It's a connection that is beyond words, a family sharing a journey together and finding power in that. Katie, the manager, is such a joyous person and that radiates all around. Thank you team telomere

Team Telomere is a wonderful organization! Supportive to the families and so helpful in giving support and advice for medical treatment. Makes all the difference, when you dont feel you are alone out there!

Team Telomere is a lifeline for many families effected by Dyskeratosis Congenita. This organization helps us stay connected with doctors, patients and other parents going through similar journeys. Dealing with this disease can be complicated as it is so rare. Team Telomere keeps us informed and also finds ways to connect you to facilities that are more experienced with these patients. I honestly don’t know how I would deal with my sons disease if it wasn’t for this organization.

We love Team Telomere. During the time my son needed some encouragement, surprisingly Team Telomere package arrived. He was so excited knowing that he has many fro who care about him. You guys rock!

Team Telomere have been an absolute godsend to me and our family. We are from New Zealand and without the support and community to Team Telomere it would have been a very lonely journey. Our daughter was diagnosed in 2014 when she was just four years old. She had a successful bone marrow transplant in 2015 and we have had continuous contact with Team Telomere. We have now travelled to the States twice to attend Camp Sunshine, and on our most recent trip we were able to incorporate a trip to Boston Children's Hospital where Gabby received treatment unavailable in New Zealand. This would not have been possible if not for the assistance of Team Telomere and the Medical Advisory Board. Without any exaggeration, they saved Gabby from losing her eyesight. We are forever grateful to Team Telomere for the support that they offer to their community.

So grateful to have found this Organization/Community after my daughter was diagnosed. When you first get that diagnosis of a rare disease, you think, if this disease only affects one in a million people how am I ever going to find someone who can relate and help me. Team Telomere goes above and beyond all of that. The people that I have been connected to and the advice and stories that have been shared have made a incredibly scary diagnosis a lot easier to deal with.

I saw how this wonderful organization helped a dear friend and her while family when one of her children was diagnosed with Aplastic anemia and dyskeratosis congenita. Rare parent need more support!!! They were actually turned down for help because he didnt have cancer, as if his life threatening condition didnt matter. It was to rare to have thousand of charities with benefits so they fought almost alone. Not to down play cancer I list my mother when she was only 52 to cancer we need research but cancer has lots of funding and charities for it.....the rare community does no we need to spread the love!!

Team Telomere is an organization with great warmth, energy and vision. It is a lifeline for individuals and families impacted by telomere disorders like Dyskeratosis Congenita. Team Telomere embraces its families at all stages in their DC journey, providing critical information and empathetic support. The organization also maintains close ties to the leading researchers and physicians in the field.

Team Telomere has been the greatest support to my family as we dealt with our sons diagnosis this year. Not only the information that I’ve been given and have learnt through Team Telomere, but the emotion support and friendships that I’ve gained has helped me through the toughest year we’ve had yet.
Grayson loved his care package and I cannot say how valuable the guidelines book has been to me!
We are the only family with DC in this hospital and as far as we know QLD, so it’s been so vital that we’ve had this organisation to make us feel less isolated, even if we are on the other side of the world to most.

My son has a telomere-related disease Dyskeratosis Congenita. Teamtelomere has provided us with lots of information to help and guide us. It connected us with medical expertise to help us figure out what to do. It gave us many connections to other families to share experiences that help us figure out what to look for. It has made us realize that we are not alone in this journey.

I can’t express everything that Team Telomere has done to assist my family. When Your child is diagnosed with something like Dyskeratosis Congenita, there’s usually no support for such a rare dissease with knowledgeable medical staff and definitely no other parents readily available to talk with. After doing my search on the web very quickly I find my support group and Team Telomere has yet to skip a beat. This is a team built on family values and nurtures each newcomer as the first. I experienced this firsthand. The immense support, planned meetings, and info at my fingers tips has been incredible... and it’s all coordinated and accomplished by a nonprofit. Team Telomere has helped connect my son's doctors with specialists near and far, with factual medical advice, advocating for theirs and OURS continuing education and so, so much more! I have connected with people who have been or are currently in my shoes, walking this trail from beginning to end WITH ME. We are family. The strength and compassion expressed by each member is unmatched and I could never replenish the gratitude by me alone for all they have done. I am blessed having found Team Telomere and I THANK each and every one of them working behind the scenes.

Ten years ago, my son was clinically diagnosed with DC/HH based on his physical presentations. I truly felt alone as even the slew of doctors we had seen had never, ever heard of it. I had to repeatedly say and spell the name of the disorder for highly educated specialist and nurses since it was extremely rare. When I found Team Telomere (formerly DC Outreach), I read the “family stories” and couldn’t believe the similarities described in the other patients, as if they could have been describing my son and taking the words right out of my mouth. After that, things rolled quickly as I was able to get in touch with others who had been through the treatment that had been recommended to us for my son. We were put in touch with the leading physicians and scientists who were determined to help us and help decide what course of action was best and when to act on it. I truly believe my son’s life was extended for the last ten years due to the action we took based on information that was learned and the action we took that was all set in motion by finding Team Telomere. Ten years later, I am thrilled that Team Telomere has continued to advocate for patients and helped so many parents, caretakers, siblings and doctors around the world. They immediately take a scared, newly diagnosed member or caretaker and put them at ease, first and foremost, letting them know they are now not alone and never will be again. They continuously gain knowledge and help empower members so they can navigate their way through these awful telomere biology disorders. Team Telomere is not just a group of commonly diagnosed people, it’s a family, and they include all who are involved: parents, siblings, doctors etc in their mission. It is a whole village of people who came together in an unexpected way, but are then forever connected.

Team Telomere has been an amazing support to myself and family over the years. When I found out my son had a rare illness it was the only place I could find valuable information and connect with other parents going through the same journey as us

Team Telomere is an amazing nonprofit!
My son was diagnosed with Dyskeratosis Congenita in 2016. When our family received the diagnosis we felt so alone. Our doctors suggested reaching out to online support groups to connect with other families dealing with DC. It took some time to settle into our new way of life, living with DC, but connecting with other families experiencing some of the same struggles and unknowns has made us feel less alone.
Thank you, Team Telomere for everything!
With much love!

Team Telomere has helped my family tremendously. When my son was diagnosed with Dyskeratosis Congenita, I didn't know where to turn for support, or who to ask medical questions. Since the disease is so rare, even the doctors didn't always know what to do, or what to expect. Team Telomere has helped connect my son's doctors with specialists around the world, hello with medical advice, advocate for education and so much more. The other families have also shared their stories and experiences. They feel like family. We feel extremely blessed to have found this organization.

They have been great and awesome. They answer questions and always there wgen you need them.

After two years of feeling isolated and lost, we finally received the diagnosis. DCOutreach provided not only support but also access to the latest information about DC and about its treatment.
I feel hope because I know we are not alone and because I know DCOutreach is working hard to help fund the next phase of research to treat and cure DC.

When my son was mistakenly diagnosed with Dyskeratosis Congenita, we found DCO. Then-President, Robin Huiras, was exceptionally inviting to us and offered all kinds of information and support. From giving us names of the real expert doctors and researchers to contact, to inviting our family to a special camp week in Maine, the whole group made us feel like a family. One of the biggest things was the DCO Guidelines for treatment book. This helped immensely in our own education of medical "experts" along the way. The monthly teleconference with doctors was especially helpful to us and ended up helping us achieve a correct diagnosis for our son, who is doing fantastic, almost a year post-bone marrow transplant. These are all amazing people fighting horrific battles, living life as an outsider cannot imagine, and they all find the time to help each other and others. The current President, Katie Stevens, spends her time helping others while attending school full-time and lobbying the government, too! She and her family even found the time to send my son a wonderful care package when he was in transplant. This is a great group, doing wonderful things. We are thankful we got to be a part of it, even if it was in error. We wish all of the families in DCO all the best and hope research continues to move forward.

DCO is a loving resource that supports its patients and caregivers with knowledge and a community. There advocacy and support of research will make lives better fir those coping with this rare disease.

I have been inspired by the outreach efforts Dyskeratosis Congenita Outreach achieves. They work to keep the community united, provide care packages to families going through transplant, and work tirelessly to continue the research efforts in the field.

When I read the Facebook posts of moms and dads seeking answers and advice, or when I read the amazing stories of children and young adults affected by DC, who meet such tremendous challenges every day, I am grateful for the dedication of the people involved in Dyskeratosis Congenita Outreach Inc. They are vigilant, always ready to connect parents to resources, to disseminate needed information as soon as it is available, to fundraise, to encourage and affirm, to go out of their way to reassure young people and their families that they are never alone.

DCO has done a tremendous amount of work to connect the individuals impacted by this rare disease and they have worked tirelessly to help educate the medical field.

The individuals and doctors who are a part of this nonprofit give tremendous amount of time and are deeply connected to the families and patients who suffer from Dyskeratosis Congenita. Those who run DCO ask for nothing and provide so much support and strong medical advice that is priceless to us who are affected.

Dyskeratosis Congentia Outreach has dedicated staff searching for a cure for this rare disease. This disease seems to have different effects depending upon the individual and the circumstance's.
I personally Know several that are a part of the outreach progam, Robin and Diane, please reach out to them with either a donation or your help in some other way. Diane and Robin pour there time and energy assisting with charitable events and alerting people like us and around the world about this rare disease and how to recognize it .
If it wasn't for them many may have been lost due to this rare disease.
Please reach out to the Dykeratosis Congentia Outreach with a donation to assist them with there efforts to tame this rare disease that cripples and cause death to young children and young adults in our neighbor hoods and around the world.
Thanks so much for your donation
Randy L Huiras
New Ulm
Minnesota.




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Dyskeratosis Congenita is a disease that not everyone is very educated on.

Until my brother in law and his 3 children were diagnosed with it, I myself did not know very much about this disease. Very often a person talks to someone who have been sick but the doctors are not able to find out what is wrong with them. It could very well be Dyskeratosis Congenita that they have but don't know it.

The volunteers at DCO have helped bridge so many connections in the world of rare, inherited bone marrow disorders. The doctors and resources it makes available to its members shed light on a very dark and daunting topic.

DC Outreach has been instrumental in our lives from the day of diagnosis. Team members have taken time to reach out to me personally and connect me to not only other families but, specialists in the field. They've taught me about studies, camps, and conferences which have influenced us greatly. They are always quick to help and treat us like family. We feel incredibly blessed to know them and have their support on our journey.

A wonderful organization that is working hard to provide education and support on a disease that isn't well known by doctors. Their work is making a real impact on getting the word out and helping those who are diagnosed.

This group is a wonderful support group for patients and family members to find information and support. This group has been helpful to me in finding doctors who have an interest in rare inherited bone marrow failure diseases.

The group had been a pillar of hope and insight into a rare and often difficult to manage process. It brings patients, families and medical professionals together.

This site has helped me in learning more about my disease and how to get help.

DC Outreach provided a link to medical specialists that ultimately saved our son's life. Because of the connections we have made through this group, we know how to take care of our son and have become a part of a wonderful community that feel like family. And now that DC Outreach has published their clinical guidelines, we have a life saving tool that can be shared with doctors all around the world. Thank you DCO!

DCO has been a great help for our family. In outreach and in building lasting relationships that helps us along in the good and 'though' times.

Thank you for all you do.

We found out about DC Outreach Inc. just after our daughter was diagnosed with the disease in September 2013. We immediately felt supported and not alone. We joined the bi-monthly skype chats, joined the face group, and started following them on Twitter. This organization has been so great at sharing information and making sure families feel supported. We may be a small organization but we have really great dedicated people ensuring that information like our newly published clinical guidelines get to families and medical professionals.

The amount o f support and amazing people that I have encountered trying to educate myself and my family about this disease is phenomenal. When we first got the diagnosis I thought "How am I ever going to find out anything about this rare disease or even meet someone who also has this!" Well, a quick search brought me to the DC outreach website and every single person I talk to has been so kind and helpful, and they have put me in touch with other parents that are also going through what our family is going through. I can not thank everyone enough, to know that you are not alone and to have other people to talk to about all of this is the most amazing gift you can be given. If you, someone in your family or someone that you know has been diagnosed with Dyskeratosis Congenita, I highly recommend that they contact people from this site. Everyone is so supportive and informative.

DC touched my life through my best friend from childhood. Her personal experience with her precious son opened up my eyes to a disease that I had never heard of. Through her experience Rachel has become an active member of the Outreach programme and is doing her utmost to educate people in how to try to begin to cope with the news that DC has affected your family. Although on the other side of the world Rachel regularly sends me literature and keeps me up to date with information that should I encounter or hear of anyone in my community facing this illness I can let them know that there will be open arms and support available to them to help them cope. This is an invaluable resource which will hopefully continue for years to come.