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.
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Dear Donor,
2021... as we wrote this we could nearly repeat the message from last year. We are still like you hanging in there and trying our best to do the next right thing. Spending our head space between dreaming and anchoring into the current realities of the times. Over the last two years we have been able to build Team Telomere to enter new horizons together. As we have had more "opportunity" to not travel and work more internally with the ever evolving landscape of COVID-19 we keep telling ourselves that this is our time to create a roadmap to travel to a cure. Cure is a word we have been heistant to use until the time felt like we were ready to dream that big. It is time to dream that BIG. These last two years have been difficult and we miss being with our community, but it has also created space for us to reach for the stars. Thank you for being right there with us.
We are happy to share the Annual Report with you from 2021. We are unbelievably grateful for every dollar donated, every hour of volunteered time, every person that gave samples and enrolled in studies to move research forward, every tear shed, every kindness shown. We would not be where we are without YOU. Thank you.
Cheers to brighter days ahead,
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After the loss of my mammy and brother due to this rare illness, I contacted Team Telomere as I was so lost and felt so alone as in Ireland no one could tell me where to turn until Team Telomere linked me in with the right doctors and got me on the right road. I'm now currently been monitored after finding I am also rare (short telomere and TERT gene). I was also blessed to have had my children tested and given the all clear only for Team Telomere I would still be in the dark I can't thank her team enough!
-Christina Coffey Ryan, Team Telomere community member
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In 2021 Together We Raised:
$370,000
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How are your donor dollars used?
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GRASSROOT
WAYS TO DONATE
Click to learn more:
If you have an idea and need help pulling off a fundraiser in 2021 let us know! We are here to help with material, technology, etc... We know that the heart of TT is built by grassroot efforts!
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.
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Pulmonary Fibrosis Month &
Telomere Biology Disorder Month partnered with Repeat Dx
Rare X Data Collection Program
Attended:
National Organization for Rare Disease Member Leaders RARE Summit
Cold Spring Harbor Telomeres and Telomerase Conference
Telomere Reserach Network
Helped to launch:
DC Needs Assessment Caregiver Study
Members of:
Global Genes Rare Foundation Alliance Council Members
Rare Disorders NZ Members
Rare Voices Australia Members
Canadian Organization for Rare Disorders
IndoRareUs
1461 Followers on Facebook
632 Followers on Instagram
1897 Followers on Twitter
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Team Telomere Science
Team Telomere MDRB Grant: $65,000
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Targeting Shelterin in Telomere Diseases
PI: Dr. Suneet Agarwal, MD, PhD – Boston Children’s Hospital
Lay Summary:
Dyskeratosis congenita (DC) is one of a spectrum of telomere biology disorders (TBDs) that affect multiple parts of the body in people of all ages. Although it is now clear that mutations impairing telomere maintenance underlie DC/TBDs, in many cases the precise mechanisms by which these mutations cause disease are not known. As importantly, how to overcome these defects to restore telomere length throughout the body remains a major challenge. In recent work, we have used cells donated by individuals affected by DC/TBDs to understand how mutations in genes encoding the telomere cap proteins, called shelterin, cause disease. In the process, we have gained new insights on how to alter telomere length in human cells. Under this award, we will test these new strategies in cells that carry a wide range of mutations that cause DC/TBDs. The overall goal of the research is to gather the evidence required to develop new small molecule therapies that apply to a broad range of genetic causes of DC/TBDs. The research to be conducted under the 2021 Team Telomere Million Dollar Bike Ride Award thereby seeks to provide a deeper understanding of disease mechanisms in DC/TBDs, and to advance novel therapeutic strategies. The Agarwal Lab is extremely grateful to the Team Telomere community and the Penn Orphan Disease Center for supporting this research.
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2021 Young Investigator Draft
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$20,000 in Partnership with Uplifting Athletes awarded to
Dr. Neha Negpal
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The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.
Young Investigator Draft grants fund research that is collaborative and translational in order to positively impact treatments and potential cures for the entire Rare Disease Community.
Uplifting Athletes has provided more than $300,000 in funding to rare disease researchers through its first three Young Investigator Drafts.
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Our Care Package Program continues to be 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, but the message is the same-- you are never alone no matter where you are in the journey.
This year we sent out 57 care packages to 9 different countries:
USA
UK
Canada
Venezuela
France
Sweden
Greece
Israel
Ireland
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In 2020 we were inspired by our friend, Clark Hundal who kept going to school throughout his treatment via a tablet. Sharing that story we were able to win the Global Genes Continuity of Care Grant, and were awarded $7500 to give to families in need, specifically to receive a tablet, tutoring and/or funds to and from medical treatment. We are delighted to say that with the help of Global Genes and our amazing donors we were able to award $10,000 to community members. The Board of Directors loved this program so much it has become a permanent piece of TT's structure. Each year $10,000 willl be available to 10 families or individuals. This is a one time assitance and a lifetime cap of $10,000.
The community assistance program has definitely helped our family.Jesse takes his laptop to the hospital when he goes for platelet transfusions every 10 days.He is doing virtual school this year due to his health and having to miss so much school. Him having the laptop allows him to attend his zoom meetings for school and do his coursework for launch while being at the hospital. We spend many hours a month at the hospital and away from home.It really has been a blessing to our family for him to be able to stay in touch with his siblings and other family members. Thank you and Team Telomere for all you have done and continue to do, not only for our family but for every family with DC or telomere disorders.
- Jayme Bakula, Mother of Jesse
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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.
While we have decided to delay Family Days until 2023 we are excited to announce we will be hosting our
2nd Annual Care Giver Retreat in Coeur d'Alene, Idaho this July.
Details TBD.
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Family Chats
We are trying something new. For this year's Family Chats we will be looking to be more topic specific. Please check out our new website page dedicated to Family Chats.
Coats Plus- Drs. Suneet Agarwal and Tim Olson
February BMT-Dr. Suneet Agarwal
Young Adult - Dr. Tim Olson
Medical Advisory Board Panel
Genetic Counseling - Ann Carr
Liver - Dr. Ryan Himes
Pulmonary - Dr. Christine Garcia
General - Dr. Alison Bertuch
Adult - Dr. Mrinal Patnaik
Newly Diagnosed - Dr. Sharon Savage
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RARE-X Announcement
Team Telomere has partnered with RARE-X to provide an exciting new platform for our community to gather, access, and share data with global researchers, clinicians, and drug developers, with the goal of accelerating future treatments and cures for TBDs. RARE-X is a non-profit organization that leverages technology powered by the Broad Institute of MIT and Harvard to support a number of different rare disease organizations, including Team Telomere.
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Due to COVID-19 & the unknown of 2021, we will be postponing the Dine, Dance and Donate to October 1, 2022. We cannot wait to see everyone and share an incredible evening!
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2021 Recipients
Sarah Simonsen
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Team Telomere Legacy
The Legacy group was established in early 2018, offering a place for our bereaved families. Grieving is a very complicated process and requires us to pay close attention to how we support our families.
As Legacy has developed we have found those that carry the program are left to shoulder heavy emotion. To be able to keep Legacy going we must change how the program is executed.
Moving forward all those that have suffered loss in our community will receive a package from Team Telomere that includes a grief journal and a small gift from us. We invite our Legacy families to join us at Camp Sunshine when we are able to be together again. We hope that you understand our decisions and why. We stand with you always, you are never alone.
We will be recognizing those we have lost throughout the year, we invite you to join us:
Spring : Million Dollar Bike Ride, your loved one's name will be featured on our MDBR tshirt. Honoring that their life is still moving research forward.
Fall: November 1, 2022 the first day of TBD Awareness Month we will be lighting a candle in each Board member's home and invite you to join us and share on social media.
With hope,
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Thank you to our Corporate Sponsors and Partners in Advocacy that helped move our mission forward in 2021!
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Executive Director
Katie Stevens
Communications Director/Graphic Designer
Haley Gonzalez
President
Kendall Davis
Board of Directors
Kendall Davis, President
Heather Kagel, Vice President
Allison Desmonde Kiene, Treasurer
Jeni Colter, Secretary
Hannah Raj, Director
Ryan McCormack, Director
Ashley Yee, Director
Eric Villeneuve, Director
Nicole Bjerke, Director
Timothy Olson, Director
Suneet Agarwal, Director
Consultants
Heidi Carson, Data Collection Manager
Maggie Rowe, Education Liaison
Medical Advisory Board
Dr. Suneet Agarwal
Dr. Sharon Savage
Dr. Alison Bertuch
Dr. Rodrigo Calado
Dr. Mrinal Patnaik
Dr. Jakub Tolar
Ann Carr
Dr. Brad Johnson
Dr. Timothy Olson
Dr. Ryan Himes
Global Ambassadors
Jacquie Roskell, UK
Amy Pilon, Canada
Rosario Perona, Spain
Christian Kratz, Germany
Megan Stephens, NZ
Rachel Little, AU
Rodrigo Calado, South America
Carlo Dufor, Italy
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