2019 Annual Report

Our mission 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.

Dear Donor,

On behalf of Team Telomere we are excited to bring you our comprehensive 2019 Annual Donor Report. We want to sincerely thank YOU for your participation in our community. Each dollar that you generously gave helped move our mission forward. Every cent was used to continue hope, create joy, move science forward, encourage patient centric research, educate physicians across the world, give courage on days that are unbearable and to continue to design a path to better days.

We truly could not do what we do without you. We hope you enjoy looking back at 2019 as much as we have, and we hope we can count on your support in 2020.

Cheers to brighter days ahead,

Executive Director

President

In 2019 Together We Raised:

$162,000

How are your donor dollars used?

Team Telomere 990

Grassroot Support:

Nothing changes the road map of research and the lives our families better than grassroot efforts from our community. Bake sales, golf tournaments, trivia night, teaming with a local restaurant, art sales, craft sales, facebook birthday campaigns, you name it, there IS a way to make dollars from it. Thank you to all those that stand shoulder to shoulder with us in the fight against TBDs/DC.

Industry Support:

With the ever-evolving landscape of advocacy organization involvement within research and drug development, we are proud to partner with pharmaceutical and biotechnology companies who are interested in the Telomere Biology and rare disease spaces. With support from our industry partners we can continue to provide our invaluable programs to our community and begin strengthening our partnerships with companies who are dedicated to improving the lives of those impacted by rare disease.

Telomere Biology Disorder Awareness

Telomere Biology Disorder Month partnered with Repeat Dx

8 Conferences

500 copies of the Clinical Guidelines given

Featured keynote speaker at the Global Genes Summit

National Organization for Rare Disease Member Leaders

Global Genes Rare Foundation Alliance Council Members

Rare Disorders NZ Members

Rare Voices Australia Members

Featured in four podcasts

Featured in publications all over the world including Repeat Dx Blog, Rare Revolution Magazine & Hematology Daily

60,000 miles traveled around the world

1326 Followers on Facebook

150 Followers on Instagram

1660 Followers on Twitter

Team Telomere Science

Team Telomere MDRB Grant: $63,000

Dr. Dasha Bubushek

Telomere biology disorders (TBD, also known as dyskeratosis congenita or DC) are caused by a defect in one of the genes that protect the ends of chromosomes called telomeres. Because of defective telomere maintenance, the ends of chromosomes in TBD patients become critically short, causing premature activation of cellular pathways associated with aging, which normally protect us by preventing replication of cells with damaged DNA. One of the most severely affected organs in TBD patients is the bone marrow. Failing bone marrow causes low blood counts and puts TBD patients at an increased risk of developing blood cancers such as acute leukemia and myelodysplastic syndrome (MDS). This research funding will allow us to determine the genetic changes that precede blood cancer development in TBD patients. We will specifically assess whether the disruption of pathways associated with aging and DNA damage is associated with precancerous changes in TBD. The results of these studies will help us to identify important genetic alterations that could serve as predictors of precancerous changes in the patients’ bone marrow and as new targets for personalized therapies.

*DC Clinic Day at Boston Children's Hospital

*Cold Spring Harbor Telomere Conference

*Funded the Clinical Care Consortium of Telomere-associated Ailments 2019 Meeting

Team Telomere Programs

Care Package Program

Our care package program has grown and become a symbol of hope not just in our community, but in the entire rare disease community. We believe that because of this program our community is stronger, our mission is stronger, and our organization stems from this simple idea, you are never alone.

Not only that, it has become a beautiful way for those outside of the community to participate in ours. Thanks specifically to Camp Bournelyf for their continued support.This year we sent out

75 care packages to 11 different countries:

United States

United Kingdom

Slovenia

Netherlands

Japan

Ireland

Puerto Rico

Singapore

France

Australia

Canada

Having a child with a rare condition can feel extremely isolating. Even if you are lucky enough to connect with similar families online, they are often far away from you. Receiving a care package from Team Telomere helped my whole family feel close to other families like ours. Now every time we wrap up in the blankets, we think about our friends and feel loved and supported.

— Kathy Peterson, Mother to 3 Children with TBDs

Family Days

In 2019 we launched our Family Days Program. This is intended to bring community to our families doors. What we have found is a transformative program for family members, caregiver, patient, researcher, clinician, basic scientist, and advocate. We believe this program is the backbone of our organization and we have found partnerships and funding for our events.

Our Cincinnati Family Day was very special to us! We really enjoyed reconnecting with DC families and getting to meet new families we had been keeping up with through Facebook. It meant a lot being with the doctors in a casual setting and learning the latest medical updates. We ended the day all together on a fun, relaxing river cruise!

Julie Clark, Mother of Josh Clark

Did you participate in a Family Day in 2019? Please take our survey so we can make the program even stronger in 2020.

Take our Survey

2020 Save the Dates

April 16, 2020

St. Louis

May 28- June 2, 2020

Camp Sunshine

July 24-27, 2020

CDA Caregiver Retreat

October 2, 2020

Rochester Family Day

October 17, 2020

Brisbane, AU

November 21, 2020

UK Family Day

Global Genes Rare Impact Grant

Family Chats

Our Family hats are a staple to getting you the information you deserve & helping to educate researchers and physicians on what topics are important to you. Thanks to our guests in 2019:

Dr. Courtney Dinardo

Dr. Tim Olson

Dr. Mark Wolff

Dr. Kasiani Meyers and Dr. Christopher Towe

Dr. Jennifer Huang

Dr. Sharon Savage

Dr. Alison Bertuch

Ann Carr

Dr. Don Hayes

Dr. Suneet Agarwal

2020 Family Chats

137 patients, researchers, caregivers, industry partners, and general community joined us for the 2019 Dine, Dance and Donate!

Across the world we raised:

$29,500

Starting in 2020, anyone that raises $20,000 for Team Telomere before September 1 will receive two complimentary flights, hotel for two nights, and two tickets to attend the DDD!

2020 DDD

Rochester, Minnesota

October 3, 2020

7-11pm

Details TBD

Naming Sponsor

Interested in sponsoring this year's DDD email info@teamtelomere.org

The close knit sense of community at the Dine, Dance and Donate was amazing. We are a very strong group of patients, parents, and doctors; incredibly vested in finding a cure for this devastating disease. One thing that was very clear at dinner, Alexander will never be forgotten.

— Elizabeth Pinto, mother to Alex Pinto

Megan Colter & Evan Cornelius

The Nancy Cornelius Scholarship has given me the chance to go to university like many other people my age. I have been able to attend classes I'm passionate about and make wonderful friends, even joining my friends at a rugby banquet. This disease doesn't always have to hold us back , we just need some extra help. That is exactly what the scholarship has done for me.

— Megan Colter

The money was a huge help to me and my family. I used it toward my second semester tuition which was less money I needed to borrow for college.

— Evan Cornelius

NCSF 2020

Team Telomere Legacy

The Legacy group was established in early 2018, offering a safe place for our bereaved families and providing support to those who understand the language and the loss. Legacy has become its own special community within the Team Telomere community. We meet quarterly, and all are welcome to join.

“Legacy is a very special community. It has been very beneficial to me connecting with other families that are dealing with telomere disorders. Our individual experiences may be different, but we all have dealt with extreme trials and circumstances that others cannot relate to. I have found Legacy to be a continued source of healing to my soul.”

— Wendy Travis, Widow of Randy Travis

Ways loved ones can honor those we’ve lost:

Showing up and showing support for others in this rare community, those currently battling as well as those grieving the loss of loved ones, is a beautiful way to honor those precious to us. Support in a unique community such as this is always reciprocated. We all still have much to offer in spite of our losses, and we tend to receive far more in return when we connect with others who’ve been on a similar journey. Volunteering for Team Telomere can look many different ways. It may be participating in special events, or perhaps it’s sharing our beautiful and broken stories. Maybe it’s creating or contributing to a fundraiser. There are countless ways to support the Team Telomere mission using your time, your gifts and your resources. If you’re interested, we will make a meaningful place for you.