2024 Top-Rated Nonprofit

Team Telomere, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: The mission of Team Telomere is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and 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.

Community Stories

152 Stories from Volunteers, Donors & Supporters

kcohee99 Board Member

Rating: 5

10/16/2024

Team Telomere understands the challenges facing patients & families with Dyskeratosis Congenita and Telomere Biology Disorders, including the need to connect with others who are going through the rare disease journey.

In addition, Team Telomere works closely with researchers to advance the knowledge of telomere body disorders. They have distributed thousands of copies of the Diagnosis & Management Guidelines and have sent care packages to patients in over 20 countries & have helped support countless families.

Previous Stories

Board Member

Rating: 5

10/25/2023

Team Telomere understands the challenges facing patients & families with Dyskeratosis Congenita and Telomere Biology Disorders, including the need to connect with others who are going through the rare disease journey.

In addition, Team Telomere works closely with researchers to advance the knowledge of telomere body disorders. They have distributed thousands of copies of the Diagnosis & Management Guidelines and have sent care packages to patients in over 20 countries.

Team Telomere was selected as one of the recipients of the prestigious Rare as One grants from the Chan Zuckerberg Initiative to develop additional programs to support and educate the community.

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dchan114 Board Member

Rating: 5

10/16/2024

Team Telomere is an outstanding nonprofit organization! It is powered by a compassionate and driven group of individuals who truly understand the difference an organization like this can make on a person's life. I am reminded of the time my father was diagnosed with a rare disease, and the nonprofit organization aligned to that disease helped my family and I immensely. I am humbled to be able to assist in creating this type of positive human impact, and I applaud Team Telomere for being a beacon of light for so many individuals who are struggling with the health challenges that this disease brings.

ckiene Volunteer

Rating: 5

10/15/2024

Team Telomere has been the support system my family has needed to get through the most difficult times. They have brought support and knowledge when we needed it the most!

phouck Volunteer

Rating: 5

10/15/2024

Team Telomere is a remarkable, efficiently run organization that supports funding, research and hopefully a cure for an insidious disease called Dyskeratosis Congenital. Please help support this organization’s important efforts!

tkiene Volunteer

Rating: 5

10/15/2024

Team Telomere is truly a life changing and life saving nonprofit focused on bringing awareness to one of the rarest diseases in the world. This well organized nonprofit has been able to attract some of the best scientists and doctors from around the world to work together to develop a cure to save lives. Thank you Team Telomere and keep bringing awareness to this rare disease that affects people from children to grown adults. Keep pushing!

imalive Client Served

Rating: 5

10/08/2024

First, my father got pulmonary fibrosis. Then my uncle developed it. Both were in their mid 70s when diagnosed. A year later, I was diagnosed with pulmonary fibrosis. I was just 55. Because PF is rare, it sent up a flag that there was a genetic issue in the family- Telomere Biology Disorder. This is a very rare, devastating disease that portends premature death and lots of health traumas. It is a scary, lonely situation. Team Telomere has helped navigate the health system, enabled me to meet others who are experiencing the same thing, connected me with experts who have advised me on specific issues to watch for, and has even provided me with physician advisors who actually will speak with my doctors to educate them on how to take care of me.

Without Team Telomere, I’d literally be dead by now.

jenalynet Client Served

Rating: 5

10/07/2024

Team Telomere is more than just a nonprofit. They are advocates. They are HOPE. They are community. They are one in a million.
From diagnosis we have faced many challenges with our daughter. Team Telomere has been the shoulder to cry on, the advocacy voice for us when big hospitals won’t listen, and the ones to help us educate those who want to learn to treat our rare child. We couldn’t do any of this without them. They continue to pave ways for our community and help relieve burdens by providing educational summits, or camps for learning and repreive. Team Telomere is a pilar to this unique TBD communtiy.

Previous Stories

Client Served

Rating: 5

10/25/2023

We connected with Team Telomere when our youngest was first diagnosed. We were lost. We were uneducated about TBD’s and alone. But quickly we realized we weren’t these things, we just needed guidance and support! TT gave us that!

If it weren’t for the community, support and resources provided by Team Telomere I can’t say our daughter would be where she is today! Our family as a whole benefited and continues to benefit from what Team Telomere is hard at work doing (fundraising, research, resources, and guidance).

Bone marrow transplant down and a whole lot of life to live!

Jeni C. Board Member

Rating: 5

10/07/2024

Team Telomere has been a lifeline for us since my daughter was diagnosed with a TBD in 2015. They offer a wide range of programs that help patients and their families in every area you can think of. Connecting to medical professionals, hosting in person events to build community and educate community members. They have virtual monthly calls with physicians. They send care packages to newly diagnosed families. They also serve bereaved family members with a variety of programs. They fund grants for research and have self published clinical guidelines for the treatment of these diseases.
I have also served in the board for 5 years. The organization has expanded their services and their reach to members across the globe, e dry year I have been on the board.

Previous Stories

Board Member

Rating: 5

10/25/2023

We’ve been involved with Team Telomere since 2016. As a patient family and as a board member.
This is the only organization that serves people and their families affected by Telomere Biology disorders.
We have benefitted from their services in more ways than I can express. We have a supportive community because of Team Telomere.
Not only do they serve the patient population in many areas they bridge the gap between the patient community and the medical community. Their advocacy and education in the medical and research community is truly remarkable given the rare nature of this condition.
Without them we would be adrift in dealing with this very complex condition.
Thank You, Team Telomere

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crrfl407 Board Member

Rating: 5

09/22/2024

Team Telomere is an extraordinary nonprofit organization that brings hope, support, and inspiration to individuals and families affected by telomere biology disorders. Everyone involved in the organization is deeply committed to the mission of finding a cure for TBD. The support network they provide is a lifeline for so many patients and family members. Through online forums, educational programs, and fundraising efforts, Team Telomere is a global leader in the TBD field and community and is an outstanding example for other rare disease nonprofits to emulate. In addition to their outstanding advocacy, the people behind Team Telomere are approachable, warm, and passionate. They go above and beyond to ensure that no one facing these rare disorders feels alone. It has been and continues to be an honor and privilege to work with Team Telomere.

sabinsley Board Member

Rating: 5

09/18/2024

I have been a part of the Team Telomere community for ~2 years. I came to it looking for resources, answers and a way to find a cure for this rare and complicated disease. What I found was a community of support, ways to get involved, and incredible connections to the medical community. As I've engaged with other non-profits, I've come to learn how well run Team Telomere is. The Executive Director has grown the organization strategically and intentionally. She has built strong support and engagement with the medical community including a world-class Scientific Summit with researchers and clinicians attending from around the world. The team provides high quality resources for patients to leverage with their physicians and connection to a network of centers that specialize in treating Telomere Biology Disorders. Lots of impressive work focused on caring for this rare community and the tireless work to gain access to quality care and some day a cure.

1

greentea Board Member

Rating: 5

09/16/2024

Team Telomere is an amazing community of people, kids and adults, who share a common underlying condition, despite all the many varied presentations. I appreciate all the events that Team Telomere coordinates to bring this community together, including connecting patients and families with medical professionals who are working towards better treatment options. Going forward I intend to continue my involvement with this organization and am looking forward to seeing it grow and thrive even more.

Previous Stories

Board Member

Rating: 5

10/09/2023

I'm very grateful to be part of this amazing organization and work with the wonderful people I have met through it. I'm affiliated with this organization through my husband, who passed away a few years ago from this horrific disease. This is the loveliest group of people I have ever worked with, and my only wish is that none of us had to go through what we did to find each other.

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1

suneetagarwal Advisor

Rating: 5

09/15/2024

Team Telomere continues to expand its reach and impact in community support and research in Telomere Biology Disorders. A highlight of this year was the Team Telomere Community and Scientific Summit in Idaho. It is an honor to work side-by-side with this remarkable organization to support and change the outcomes for individuals with TBDs.

Previous Stories

Professional with expertise in this field

Rating: 5

10/31/2023

Team Telomere provides critical support to patients, families, caregivers, physicians and researchers, all towards the goal of improving the lives of individuals facing these devastating disorders. It is an honor to work with Team Telomere!

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1

KateS24 Volunteer

Rating: 5

09/11/2024

Volunteering at Team Telomere's Symposium this summer was an absolutely incredible experience. Witnessing the strong, supportive community they’ve built was truly magical. TT provides invaluable support to families and fosters remarkable collaboration between patients, clinicians, and researchers. It was inspiring to see the direct connection between the community and the scientific experts working to advance understanding and treatment of Telomere Biology Disorders. I am genuinely inspired by the work they do and proud to have been part of it.

1

timsolson Professional with expertise in this field

Rating: 5

09/11/2024

Team Telomere is the Model for what a Patient/Family Advocacy and Support Group should be for patients with rare diseases. What they have accomplished is truly amazing.

AdAstra General Member of the Public

Rating: 5

11/02/2023

Team Telomere, Inc. has been an excellent source of information for my family. We learned my 12-year old nephew had Dyskeratosis Congenita and required a bone marrow transplant from an anonymous donor four years ago.

Nothing prepares a person for a diagnosis like DC, we grateful for Team Telomere's subject matter expertise.

PaulaSmith.75 General Member of the Public

Rating: 2

11/01/2023

Hi im paula and im 48.
I havent got anyone near to me that shares my disorder. So whether it is support or just a chat, there is always someone too talk too.
This year has been very challenging health wise I havent reached out as I am not quite ready, but I know where to go.

zacharyr90 General Member of the Public

Rating: 5

10/31/2023

Our daughter needed a bone marrow transplant and team telomere provided us with knowledge and resources we desperately needed. They continue to provide support and a sense of community.

kjdavis28 Board Member

Rating: 5

10/31/2023

This is an amazing organization that stays true to their mission. It is an honor to be a part of this group.

ljb013 Board Member

Rating: 5

10/31/2023

I serve on the Board of Team Telomere and anm inspired by the dedication and passion of the organization to serve families with Dyskeratosis Congenital and related telomere biology disorders. The commitment to the mission to make a difference in these families lives is unwavering.

pkrishnan Board Member

Rating: 5

10/31/2023

Team Telomere is a fantastic organization that is focused on the Telomere Biology disorders (TBD) community. The staff are dedicated to ensuring equitable care, access and support to all patients and caregivers. Through this organization the TBD community has been active in research, scientific collaboration, community support, public policy and advocacy. It is a privilege to be a part of this wonderful organization supporting their work for the entire TBD community.

rare5 Donor

Rating: 5

10/31/2023

Team Telomere is one of those names in the rare disease space that holds respect and admiration, regardless of what community you come from. The ED is dedicated, approachable and beyond committed to the TBD community. They are shining light in this space and their disease community is lucky to have them.

ahauser5 Board Member

Rating: 5

10/25/2023

This organization has always stood out to me in the rare disease space, which is why I was interested in joining their Board. They are dedicated to making the Telomere Biology Disorder community feel seen and supported, and through this effort they have been able to start driving the science forward for treatments and cures. They have the right order of events and through this they have fostered trust in the community, which is only continuing to drive big changes in the TBD space.

JoshsDad Board Member

Rating: 5

10/14/2023

Team Telomere continues to provide community and thought leadership to those impacted by telomere disorders. They are brining patients, clinicians and researchers together to create a better tomorrow for those facing very difficult and rare medical conditions. Team Telomere sets a benchmark for other organizations and the rare disease community.

nicci04 Client Served

Rating: 5

09/28/2022

Having an extremely rare telomere disorder, I often feel alone. My twin boys who are in middle school have this disorder too. But no one around here knows about it. Most people don't even know what telomeres are. This group gives me insight to what others are going through who are dealing with the same issues.

myamashita Client Served

Rating: 5

09/26/2022

There aren’t enough words to express what Team Telomere means to my family. There is nothing more frustrating and heart wrenching than to try to navigate a disease of which so few physicians are familiar. This organization is like family. They offer support, resources and hope! We would be lost without them!

Previous Stories
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Client Served

Rating: 5

09/15/2020

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.

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gwysocz1 Client Served

Rating: 5

09/26/2022

I went undiagnosed with a Telomere disease for 31 years of my life. When I was diagnosed, the local healthcare providers didn’t have many patients or informational protocols for best care. Thanks to Team Telomere, I was able to find resources and assistance through a caring community. I attended many informational sessions regarding my disease and became well acquainted with many people within the Team Telomere network. Due to Team Telomere’s work, I was able to get help with my diagnosis, better understand the journey, and be more proactive about my health. Team Telomere was especially critical with helping me find physicians who specifically treat my conditions. The entire team does an amazing job at welcoming Telomere Disease impacted people into their family. Without their help, I would truly be lost when it comes to navigating my Telomere Disease.

KellyVandy General Member of the Public

Rating: 5

09/25/2022

Team Telomere does a beautiful job supporting families through their journey with Telomere disorders. They provide information, funding and hope. They are constantly striving to find new ways to aid families, whether it be through care packages, their community assistance program, or their book club. They are doing tremendous things, and they will find a cure.

aebaxter22 Client Served

Rating: 5

09/25/2022

Great resources and people to help navigate or health challenges

Megan_NZ Client Served

Rating: 5

09/25/2022

As the mother of a child in New Zealand with Dyskeratosis Congenita, I can not thank Team Telomere enough for the support we have received over the last 7 years, both peer and community support, as well as support from the medical advisory board. Without them and their continued advocacy it would be a very lonely journey.

Previous Stories
1

Volunteer

Rating: 5

09/16/2021

Over on the other side of the world in New Zealand, is a lonely place to be when your daughter is diagnosed with a rare disorder. When our daughter was diagnosed with Dyskeratosis Congenita in 2015 we found what was then DC Outreach and now Team Telomere. We have attended Camp twice and regularly hop on goo ok attended the monthly family chats. Team Telomere has provided us with support and access to expert medical advice that we so desperately need. We are extremely grateful.

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chellychelle Client Served

Rating: 5

09/24/2022

I am lucky to find this organization as I was diagnosed in my late 40's but have had the related issues all my life. The Team Telomere representatives welcomed me with open arms and the welcome care package was great. I have enjoyed the interactions the last 4 years and looking forward to more. They are kind, knowledgeable and will go the extra mile to help with answers and connections to the leaders in this field.

telomere Client Served

Rating: 5

09/24/2022

Having a rare disease is awful for several reasons. But having Team Telomere there helps with one drawback and that is finding people who know about the disease and who have experience with the symptoms and treatment. Most doctors have never heard of the disease, so I am having to educate my docs. I can do that with the help of the community, and to a strong degree, the research, medical protocol book they publish, as well as access to their Board, most of whom are doctors who treat telomere related diseases. Thank heavens for Team Telomere!

1

heatherkagel Board Member

Rating: 5

09/24/2022

This is a wonderful organization that provides immeasurable support for the telomere biology disorder community. From care packages for new patients, to community grants, to providing research grants and medical guidelines and protocols, Team Telomere does so much.

1

amcurry Client Served

Rating: 5

09/24/2022

Team Telomere has helped me so much to understand my disease process and connect with others who also have it. When I was extremely sick, they sent a care package to cheer up my kiddos. They also provided support and encouragement throughout my stem cell transplant journey.

1

NicoleAnn Board Member

Rating: 5

09/24/2022

This organization has been here for my family since its conception. I lost my daughter to this awful disease. I'm forever grateful for this community. I wouldn't have made it through. Thank you is not strong enough words for what I feel for Team Telomere.

Kahlil Client Served

Rating: 5

09/20/2021

Being a caretaker for my wife who was ill with a telomere biology disorder was the single most rewarding, challenging and fulfilling experience of my life. This was only possible with the help of Team Telomere. When she was first diagnosed, we had no idea what was in store for us. She immediately felt loved and welcomed by TT members who shared their journey and helped her (and consequently me) for her journey. Each step of the way, there was a phone call, a doctor's insight, a care package or a virtual hug to help us along. And after she passed, all too soon at the age of 31, Team Telomere helped me in my recovery and in my darkest days with the same love they showed my wife. I will be forever grateful.

3

luisfz Professional with expertise in this field

Rating: 5

09/15/2021

Team Telomere is an amazing resource for researchers studying telomere syndromes and their biological consequences. It provides a series of resources for scientists to connect with patients and advocates, leading to improved knowledge on how these syndromes manifest and therefore help guiding our experiments in lab. In addition, it provides much needed research support for the field, helping us expand our research goals and bringing us closer to improved treatment for patients

3

shannielleblack Client Served

Rating: 5

09/15/2021

Team Telomere was such a great support during such a difficult time in our lives. Dealing with a rare disorder is hard enough, but they were able to provide resources for my husband, my family, as well as the medical team. Although my husband lost his battle, I know we did everything that possibly could be done. The outreach from members of team telomere was outstanding. I got a few texts just saying someone was thinking of us and asking if we needed anything. I can't express how deep my gratitude is for this wonderful organization.

3

RobKat13 Client Served

Rating: 5

09/14/2021

Team Telomere has been an amazing, informative and supportive resource to me and my family. My husband and our three little boys were diagnosed with Dyskeratosis Congenita 6 years ago, before my youngest was even born. It was overwhelming to say the least. Once I connected with team telomere, not only did I gain access to the best information out there, but to a whole group of people who knew what we were going through. We no longer felt alone and have been supported ever since. I don’t even like to think where we would be today without team telomere.

3

Tara100 Client Served

Rating: 5

09/14/2021

Team telomere Inc has been life saving and changing for our family. Our daughter was diagnosed in 2014 with DC and when I reached out to them for guidance, the small but mighty group of volunteers at the time helped us navigate this rare disease world. Over the last 7 yrs this group has grown and thrived under the direction of dedicated volunteers and medical advisory board to support families all over the world. We are supported in so many ways Making this often lonely rare disease world full of love and companionship.

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26

Client Served

Rating: 5

09/26/2014

This organization has been an amazing support for my family. The access to information on their website, tweets, and skype sessions has been very informative and reassuring. Without DC Outreach we would be lost with out a map with out knowing which way to go. The families we have met through email and social media have been such a support to us dealing with this disease, we are feeling very grateful to be apart of this group.

3

kdavis28 Board Member

Rating: 5

09/14/2021

I have had the pleasure to work with TT for a couple of years now. The organization is deeply committed to the community and continues to evolve with the ever changing world of rare disease. Watching the organization and community grow has been amazing. I cannot wait to see what TT does next!!

3

haraj71 Client Served

Rating: 5

09/14/2021

Team Telomere is truly an amazing organization that plays an integral, invaluable role in the Telomere Biology Disorder community. From increasing awareness; advocating for patients; connecting and supporting patients, their families, health professionals, and researchers; and so much more, this organization goes above and beyond in every way. I, personally, cannot imagine where I would be without this organization. Thank you, Team Telomere!

3

HaleyGonzalez Board Member

Rating: 5

09/14/2021

I am an employee of Team Telomere and I am proud to work alongside the Executive Director and the wonderful group of Board of Directors who help make all of this possible. Team Telomere strives to provide the best research and advocacy by supporting/educating patients and families with Telomere Biology Disorders. The effort that Team Telomere puts into all the organization's programs really makes it stand out from the rest. I am glad to work for such a great organization who goes the extra mile to help people in need.

3

amcurr29 Client Served

Rating: 5

09/14/2021

Team telomere has been a god sent to me since first being diagnosed in 2016. This past year alone the community supported me through a failed bone marrow transplant and a second transplant a few months later. The staff is always willing to go above and beyond to provide resources and connect you with experts. In addition I was given the personal contact to Katie Stevens who helped me through some of the most difficult time. Being diagnosed with a rare disease is scary, and having this community makes you feel less alone.

2

dgpearce Donor

Rating: 5

09/16/2020

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!

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4

General Member of the Public

Rating: 5

10/18/2018

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!

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2

publicjoy General Member of the Public

Rating: 5

09/15/2020

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.

2

Ryan_McCormack Board Member

Rating: 5

09/15/2020

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.

1

sarahg83 General Member of the Public

Rating: 5

09/01/2020

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.

1

ColleenVerkaik Board Member

Rating: 5

09/01/2020

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.

1

Elisabeth Hammar P. General Member of the Public

Rating: 5

09/01/2020

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!

1

EffieLyn General Member of the Public

Rating: 5

09/01/2020

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!

1

jcwyo Board Member

Rating: 5

08/23/2020

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.

5

SurfergirlDC Volunteer

Rating: 5

09/05/2019

They shine a light on a disease that few have heard of. Thanks for all that you do to help bring awareness to Telomere Biology Disorders, to support patients & their families and to help fund research that may someday result in a cure for a disease!

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Board Member

Rating: 5

09/22/2015

This charity saves lives. It brings together people who have had devastating news about their loved ones with a telomere biology disorder/Dyskeratosis Congenita. It wraps around them providing support, information and knowledge. It supports a worldwide network of parents, doctors and outstanding researchers who support and provide hope. I was so impressed by this amazing group, that I joined as a board member of DC Outreach in 2014. Knowledge is power!!

8

Nicole J.1 Client Served

Rating: 5

09/05/2019

My daughter had DC. We lost our Rilee in March of 2017. What Team Telomere has done for us is priceless. I wouldn't have survived without them.

3

Lorlap General Member of the Public

Rating: 5

09/05/2019

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.

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Client Served

Rating: 5

10/17/2018

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.

4

mrscramer81 Client Served

Rating: 5

09/05/2019

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!

5

Awilda S.1 Client Served

Rating: 5

09/05/2019

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.

5

JRoskell General Member of the Public

Rating: 5

09/05/2019

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.

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Client Served

Rating: 5

10/18/2018

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.

5

Jennifer S.19 Client Served

Rating: 5

09/05/2019

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.

5

DMO1 Client Served

Rating: 5

05/01/2019

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

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Volunteer

Rating: 5

09/25/2015

Dyskeratosis Congenita Outreach provides so many benefits! One of the most beneficial to families is a monthly lifeline, in the form of a chat via Skype with a medical adviser physician. Families register for this chat via the DCOutreach.org website. There is no cost. During this chat, families can ask any question that is on their mind about symptoms, care, information, drugs, 2nd opinions and even hear from other families on the chat regarding their experiences. It is so helpful and comforting. This year they published the first ever Clinical Guidelines book, written by physicians, which discusses recommended treatments for the multitude of symptoms and problems that are present with this disease. Information on getting a copy of this book is available on the website.

2

Noam B. Client Served

Rating: 5

10/20/2018

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

3

Joanna W. Client Served

Rating: 5

10/19/2018

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!

4

alexman General Member of the Public

Rating: 5

10/19/2018

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.

5

Writer General Member of the Public

Rating: 5

10/19/2018

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!

4

Megan S.5 Client Served

Rating: 5

10/18/2018

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.

5

fesslee Client Served

Rating: 5

10/18/2018

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.

4

tiffanyls1981 General Member of the Public

Rating: 5

10/17/2018

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!!

4

Writer Client Served

Rating: 4

10/17/2018

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.

4

Rachel L.1 Client Served

Rating: 5

10/17/2018

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.

4

Awilda S. Client Served

Rating: 5

10/17/2018

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.

4

byersfamily Client Served

Rating: 5

10/17/2018

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.

3

JennyC123 Client Served

Rating: 5

10/17/2018

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.

3

Claire B.2 Client Served

Rating: 5

10/17/2018

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

3

JesseTC Client Served

Rating: 5

10/17/2018

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!

3

BethanyH Client Served

Rating: 5

10/17/2018

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.

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23

Client Served

Rating: 5

09/22/2015

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!

3

Rosie72 Client Served

Rating: 5

10/17/2018

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

3

verkaiks Client Served

Rating: 5

10/12/2018

Team Telomere has found a beautiful way to reach and show compassion for patients and families with Dyskeratosis Congenita (as well as other Telomere Biology Disorders), and has even found a way to include those of us grieving the loss of our children because of this terrible disease. Whether it’s being together at Camp Sunshine, representing at the Global Genes Summit, providing education or promoting fundraising events, each and every day spent with this organization is another day fighting, another day advocating, another day researching...and it’s a true privilege to be a part of it.

4

nancdil Client Served

Rating: 5

10/11/2018

Team Telomere (DCO) has been a great help to us. Arranging conference calls with the medical advisory board who provided referrals to doctors my daughter desperately needed. Stepping in during a crisis to obtain travel resources to much needed care. Giving all of us who would likely never meet another family with this rare disorder the opportunity to connect, share and support each other on this difficult journey.

7

Peggy R.1 Client Served

Rating: 5

09/04/2017

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.

9

rf88 Client Served

Rating: 5

08/04/2017

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.

10

joshuacl Client Served

Rating: 5

08/03/2017

If it wasn't for DCO we would have never been able to go to Camp Sunshine where we were introduced to our son's transplant doctor. DCO has promoted research and education for Dyskeratosis Congenita that has been life saving for our family and many other families. Thank you DCO!

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26

Client Served

Rating: 5

10/05/2014

The special bond we have made with families through DC Outreach has been priceless! These families have been with us all along giving us encouragement as our son went through his bone marrow transplant 2 years ago. Through DC Outreach we found out about Camp Sunshine and that is where we met our son's transplant doctor that has been with us from that very first contact at camp and that has brought us so much hope! By not having to deal with this disease alone and having the support of all the other families we have gotten to know has made this journey a lot more bearable!

10

Bruceandpattief Client Served

Rating: 5

08/03/2017

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.

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22

Board Member

Rating: 5

09/30/2015

DC Outreach has provided access to medical resources and emotional support to families impacted by this extremely rare disease. This grass-roots organization has a tremendous impact on those struggling through a profoundly difficult & rare disease.

8

sietskezuidersma Client Served

Rating: 5

08/03/2017

With DCO we got a new family. Everyone we met is in our hart. DCO helpt us trough the hardest time in our life! We gaint a life long friendship. Without DCO we were lost in our country because there is just not enough knowledge here. Thanks for beiing there for us.

9

bhilton11 General Member of the Public

Rating: 5

08/02/2017

My son Max was diagnosed with DKC at the age of 13 months old, he then sadly passed away aged 15 months after contracting PCP Pneumonia due to severely low immune system. He had such severe bone marrow failure the Drs said that it's normally seen in an older adult. He sadly had all of the traits of DKC in an aggressive form and fought as hard as he could be he always had a big smile on his face. I have been shown a great deal of support from this organisation, especially from Katie. I hope many other parents, children and family get the support they need and I'm sure this organisation will help many more ❤️ Thank you!

8

Writer Client Served

Rating: 5

08/01/2017

DCO is invaluable to this rare disease community! The dedicated volunteers have helped to provide crucial, life-saving information to patients and care givers. The organization has also connected a group of people from around the globe to share vital data, research, and emotional support. Friendships made within the DCO community online and especially at the biannual camp (provided/organized by DCO), have made a big difference in coping with the ups and downs of this rare disease, as well. DCO is the BEST!!

8

jenn0727 Client Served

Rating: 5

08/01/2017

They helped connect me with doctors that saved my son's life. This organization is priceless.

7

edziedzic1 Board Member

Rating: 5

08/01/2017

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.

5

Katie162 Board Member

Rating: 5

08/01/2017

I can say without a doubt, I still have my firstborn because of DCO! They helped me reach physicians that specialize in this disease. It created relationships that continue for my husband and I as caregivers, for my son as the patient, and for my other children as the siblings. No one feels alone or lost with DCO.
I felt so passionately about the mission I volunteered to help continue it, and can proudly say that both on the outside and inside, DCO is an amazing NPO, that is making a big difference.

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8

Board Member

Rating: 5

09/21/2016

DCO has been absolutely essential in saving my own child's life. The board members and medical team that make up this group are instrumental in making sure information and connections are made to better the patient and families lives. I cannot say enough good about DCO. They make the world a better place. After our first camp I was so inspired I had to be a part of it too.

8

gailbhb Donor

Rating: 5

09/20/2016

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.

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15

Client Served

Rating: 5

10/12/2015

How do you explain a bone marrow failure cancer-causing genetic disorder in what started out to be a casual conversation about a loved one? Where can you connect with the parents and family and friends of other "one in one million" loved ones who are seeking answers to the same questions? This website connects those affected by DC with those who seek to effect change. It has been an invaluable resource for my family.

8

edziedzic General Member of the Public

Rating: 5

09/19/2016

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.

11

jhuiras Volunteer

Rating: 5

09/14/2016

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.

11

randyhuiras Donor

Rating: 5

09/14/2016

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.




.

10

Phyllis_DeSaer General Member of the Public

Rating: 5

09/13/2016

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.

10

robinhuiras Board Member

Rating: 5

09/12/2016

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.

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18

Volunteer

Rating: 5

09/21/2015

The outreach and support group helps connect families affected by rare, telomere biology disorders. The volunteers who run the group provide family support meetings, sponsor family retreats, and support physicians involved in research. DC Outreach, Inc.'s Facebook page allows families the opportunity to ask questions questions and find answers not readily available in conventional media.

Core tenants of the group are education and advocacy and it recently published the disease's seminal treatment resource to aid families and physicians in managing this complex condition.

Read more
9

mamakoch645 General Member of the Public

Rating: 5

08/31/2016

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.

12

heatherh101 Volunteer

Rating: 5

07/19/2016

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.

12

VickieChris C. General Member of the Public

Rating: 5

11/10/2015

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.

13

Writer Volunteer

Rating: 5

10/11/2015

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.

16

Writer General Member of the Public

Rating: 5

10/02/2015

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

15

Rachel71 Board Member

Rating: 5

09/30/2015

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!

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26

Board Member

Rating: 5

08/30/2014

The information and access to medical specialists that DC Outreach connected me to was truly life saving for my infant son. I am proud to be a part of this group and to work to connect other families to this help and support.

20

NGodfrey Volunteer

Rating: 5

09/27/2015

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.

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30

Client Served

Rating: 5

10/01/2014

DCO has been an amazing help for our family. Through this organization we have made connections with many of the foremost doctors in Hemotology, Transplant sciences and Genetics. We have met and built friendships with other families battling Dyskeratosis Congenita and been able to link together to support each other. DCO is on the forefront of research, with a medical board that is deeply involved, heading up multiple studies, developing standardized diagnosis, treatment and transplant protocols. DCO also hosts a camp that brings together patients, families and doctors for a week of information and fun. DCO has given us hope, and a belief that we are not alone. Truly an amazing family centered organization.

19

Tara246 Client Served

Rating: 5

09/22/2015

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.

20

Writer General Member of the Public

Rating: 5

09/17/2015

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.

22

Rachel128 General Member of the Public

Rating: 5

10/10/2014

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.

23

AbbiAnder Donor

Rating: 5

10/07/2014

My family has been greatly impacted by DC. The information sent out and the camp have helped us understand we are not alone, find knowledgeable doctors, and encourage us. We have seen the great strides that have been achieved. We were greatly blessed by 2 disease free grandchildren which we never thought we would have any at all. This group really reaches out to doctors all over the world who study DC, and make huge steps forward for all people affected and makes the miracles of a good life happen. I thank them so much more than I can say, please support them, Abbi

23

diane03 Client Served

Rating: 5

10/03/2014

Over 20 years ago, my husband and brother-in-law were both victims of this disease. Our families with 5 children each, were so alone in our grief. We were told the disease was not very widespread and not much was known about it. Then one of our daughters was diagnosed, then a nephew. We were so alone. A few years ago, two more sons, and two more nephews were diagnosed. So much more was learned about the disease through the years, especially that it is much more widespread than anyone thought. The doctors at the NIH suggested starting a non-profit outreach for others like ourselves and DC OUTREACH was born. The resources, knowledge and support the doctors provide to everyone, all year round, but especially at Camp Sunshine, cannot be measured in words. DC OUTREACH is a lifeline to so many courageous families, now reaching families nationally and internationally. It insures no one will ever be alone again.

22

sethhuiras General Member of the Public

Rating: 5

10/02/2014

DC Outreach truly cares about making a difference in so many people's lives. By providing a strong support network for those diagnosed and their families, DCO serves as an invaluable resource. I support its work in educating the public, organizing retreats, advising, and simply giving hope to those affected.

22

Kathleen81 Volunteer

Rating: 5

10/02/2014

great organization helps families that are affected by this horrible disease.

22

Michelle255 Client Served

Rating: 5

10/02/2014

DC Outreach are so passionate about their cause, it has given me much hope, strength and wonderful resource of caring people to connect with so living on the other side of the world, really dosnt feel that far. all volunteers I have been in contact with really do care, as they have their own story with DC.
Having fundraised hard to travel to Camp Sunshine in a couple of weeks, which will be a trip of a lifetime in itself, I feel ill be meeting some of my family for the first time.

23

SarahFiske-Phillips General Member of the Public

Rating: 5

10/01/2014

DC Outreach goes above and beyond serving families affected by DC. They also see the importance of educating the public and giving them ways to help. I plan on supporting DCO for the rest of my life.

23

parisandmidnite General Member of the Public

Rating: 5

10/01/2014

I'm very impressed w/this organizaton. They truly are helping those effected by this disease with their research and with their education to the familes and general public as a whole. I have participated in a fundraiser event given by a dear friend who's son has DC. Her son received help and is doing very well and now she's out there becoming a donor, fundraising, educating and helping others. It's a great thing to see!

24

Kjellgunther General Member of the Public

Rating: 5

10/01/2014

My stepson was diagnosed with DC in march 2013. I searched the internet to look for an organisation, and immediately dc outreach came up. A well organised and informative site. There is actually just this organisation worldwide that post news, events and stories from families and individuals that deals with this disease. In addition to this doctors, board members and people can connect very easily either through skype conference or email. I am truly amazed by how helpful the doctors along with the board members are to provide us with advice in our situation. We live in europe and without DC outreach, we would not be able to gain any other information other than through doctors here ,that do know very little of this illnes. We can now use the dc outreach as a third part in our situation to confront the doctors and medical staff over here, with the knowlegde from the Dc staff. Unfortunately we could not attend the camp sunshine this year, but we are looking foreward to next.

24

Emily93 General Member of the Public

Rating: 5

10/01/2014

My friend has Dyskeratosis Congenita, and I have watched her struggle with this disease for years. The outreach organization has helped her immensely - connecting her with specialists and with other people living with DC, as well as allowing her to give back to this community through volunteer work.

This is a great nonprofit, and I'm so glad it exists.

24

wstewart General Member of the Public

Rating: 5

10/01/2014

From the day we, Cheryl my wife and I, found out about our grandson’s condition we were made aware of DCOUTREACH. We did not know of it previously but listened to our daughter talk about the “life line” it had turned out to be to her and her family.

Of course Rachel, our daughter, was the recipient of the benefit of the knowledge and resources that this charity offered. As time and circumstances developed Rachel became a more active participant instead of just a recipient. Obviously as her son was affected she remained in contact with individuals, but, knowing our daughter, she wanted to repay the help she received and assist others in any way possible.
I can only be proud of the fact that now she will be “there”, at a difficult time, when someone else receives the life changing news that a loved one is affected by this condition.
We, the affected people, who were previously ignorant, learned that the existence of this body was definite life saver.

23

susijacobsen Donor

Rating: 5

10/01/2014

I donated items to a DC Outreach fundraiser. But I did so because a little guy in our church community had the terrible condition. Prior to that, I had never even HEARD of DC, which is, unfortunately true of most of the population and, amazingly, most doctors.
We are incredibly lucky and blessed that he is as healthy and happy as he is today and we wish this for ALL those affected with this horrendous disease. But this can only happen with increased awareness by doctors, families, and communities and then appropriate research and response. This is the nonprofit that can accomplish those goals.
Thank you,
Susi Jacobsen

24

gabysita Volunteer

Rating: 5

10/01/2014

This is a wonderful outreach group for families with DC. There is so much care, love, concern and time that goes into helping/informing people about this particular disease. Helping anyone is wonderful but helping someone who is going through a difficulty is priceless. I hope DC continues to provide their services and may may God bless all workers, volunteers and patients. amen.

23

smessier Client Served

Rating: 5

10/01/2014

When we found out our son had DC it was devastation. I went on the internet to learn more and got so depress because the out look was bad. Most doctors we come in contact with have never heard of this disease. We found out about Camp Sunshine the first year DC Outreach had a meeting. That is where we had learned so much about this disease. DC Outreach open up window for us and now we are not alone. We have met lots of wonderful people who are dealing with the same thing we are. I thank God everyday for DC Outreach. We are not in the dark anymore.

24

Sietske Z. Client Served

Rating: 5

10/01/2014

7 years ago we found out our daugther had DC. 2 years later she had a bmt. The doctors told us she could get very old with DC so we never looked for more information because we simply tought she would be okay.
A couple of years later she has big health problems. The doctors over here know so little about the disease they could not tell us what to expect.
Then we started looking for people who now more. And maybe someone we can talk with. And we find out! We came in contact with DCoutreach! And it stanged our life! We know so mutch more right now. We made contact with people who make trough the same thing everyday just like us. We can talk to each other. Even we are planning to go to camp. We starded a fundraiser to get us there.. we get a lot of help from a great woman, one i consider my friend. strange...i have never met her but she feels like my friend.
She helped us so mutch. I can say DCoutreach is great! Unbelievable great!

24

LisaHG Board Member

Rating: 5

09/26/2014

This is such a great disease advocacy group and family support group! The friends I have met are priceless! I learned about DC Outreach shortly before Camp Sunshine in 2012 and had the opportunity to meet the group at Camp. DC Outreach has some great family chats via Skype, newsletters, and just support knowing that you are not alone. It was because of my experience at Camp that I wanted to help volunteer. I became a board member in 2014. We have some great initiatives going on with a Dyskeratosis Congenita/Telomere Biology Disorder Registry and Clinical Guidelines. I'm excited to be a part of the group!

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