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Team Telomere, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita & 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.

Target demographics: patients and families with a dyskeratosis congenita & telomere biology disorder diagnosis

Direct beneficiaries per year: about 200 families from approximately 9 different countries

Geographic areas served: worldwide

Programs: on line support, monthly family chats with medical advisors, educational materials for doctors and patients, newsletters, long weekend sessions at Camp Sunshine in Maine where children attend "camp" and adults attend lectures by the world's leading authorities on Telomere Biology Disorders. Our Facebook Page is: https://www.facebook.com/teamtelomere/ Our Twitter Page is: https://twitter.com/TeamTelomereInc

Community Stories

77 Stories from Volunteers, Donors & Supporters

1 Noam B.

Client Served

Rating: 5

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

1 Joanna W.

Client Served

Rating: 5

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!

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!

1 Megan S.5

Client Served

Rating: 5

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.

1 dgpearce

General Member of the Public

Rating: 5

A wonderful organization working hard internationally to find a cure! They have grown exponentially in the past year due to parents of children suffering from telomere disorders teaming up with the finest doctors in the world. Together they are pushing science forward!

Previous Stories
6

General Member of the Public

Rating: 5

Five years ago I spent countless hours researching D.C.. We had never heard of it and had no idea what the future held for our first born grandson. I first discovered Camp Sunshine and through them learned of D.C.O.. Because of both, my daughter and son-in-law were able to meet a doctor that saved our grandson's life. It also put them in touch with other parents/patients fighting this rare disease. The advocacy program is wonderful and vital as you can feel very alone in this fight.
My daughter is now President of D.C.O.. The work that she and the other members do is priceless. There needs to be more money earmarked for the research of orphan diseases and they work tirelessly to try to make sure that happens for D.C. and shortened telomere biology disorders.

2

Client Served

Rating: 5

Team Telomere go above and beyond to support, advocate and care for patients and their families. They are focused on research and finding a cure for this cruel disease. The board members including the medical advisory board are approachable and accessible. My family truly would have been lost without this charity and the community that it strives to keep together so that none of us ever feel alone on this long and difficult journey.

3

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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!!

2

Client Served

Rating: 4

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.

2 Rachel L.1

Client Served

Rating: 5

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.

2 Awilda S.

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

2 Jeni C.

Client Served

Rating: 5

This organization is the first place we were directed after our daughter was diagnosed. They do an amazing job providing many different services to families with the rare disease Dyskeratosis Congenita and other Telomere biology disorders. First, they have a thriving patient group that connects people virtually and in person. Camp Sunshine, a patient education summit that occurs every two years, is an amazing opportunity to connect with families and learn about DC, the treatment options and current research studies straight from the specialists that treat and study this condition. We have many meaningful relationships that started at Camp Sunshine.
Secondly, they give access to the Most qualified physicians to treat this condition through their medical advisory board. We have directly contacted more than one physician on the board to aid in the treatment of our daughter. They have been extremely helpful in guiding us in the right direction.
They educate patients and the medical community at large. More and more physicians are becoming aware of DC and how to properly treat it because of Team Telomere’s commitment to network with the rare disease community and the specialist that serve the rare disease population.
Finally, They work dillegently to fund grants for research that is producing better treatment options. In the three years since my daughter’s diagnosis research studies funded by Team Telomere have produced better options for managing her condition.
We love this organization!

Previous Stories
7

Client Served

Rating: 5

After my daughter was diagnosed with DC this was the first place we were directed to. The information we have received through the website, on monthly family chats and by attending family retreat at Camp Sunshine has been invaluable. We would be lost without them.

2

Client Served

Rating: 5

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.

2 Claire B.2

Client Served

Rating: 5

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

2

Client Served

Rating: 5

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!

2

Client Served

Rating: 5

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.

Previous Stories
22

Client Served

Rating: 5

When my son was diagnosed in 2014, I felt like I had no where to turn. Because DC is so rare, not even our doctors could give us a clear understanding of this disease. After searching on-line, I found DC Outreach. They have helped me understand DC, meet other parents and patients going through the same ordeals, and have provided the latest medical news regarding DC. This shared knowledge helps me better care for my son, and understand what to look out for in the future. Thank you DC Outreach!

2 Lorlap

Client Served

Rating: 5

Team telomere has been amazing emotional support through phone calls and online and especially though our week at Camp sunshine meeting other families and learning so much from experts. It is a comprehensive resource for information about telomere biology diseases. The clinical guidelines had been invaluable resource to bring to doctor visits and also to recommend to doctors.

2

Client Served

Rating: 5

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