Resources
Newly Diagnosed
Team Telomere knows that the moment you learn the diagnosis of telomere biology disorder, you feel completely isolated and alone. We are here to help, and share in the journey with you, by giving you the resources you need to fight this disease. Please click on our informational video to learn more about TBDs, and follow the link to our Resource Map. This map was created to help you find specialists in your region and beyond. It is a constant work in progress so please be patient with us, if you need any assistance, please email info@teamtelomere.org
Learn more about how to receive telomere length testing by visiting Repeat Dx website.
Patient Care Packages
Our team has a favorite saying “it takes a village”, and that means taking care of those in our village. Feeling connected to those that are going through this journey is an important part of the medical process. Team Telomere provides care packages for our patients, no matter where there are in their journey & no matter where they are in the world.
Registry
The National Cancer Institute (NCI) is conducting a long-term study to better understand the medical problems and genetic aspects of telomere biology disorders (TBDs). This study has evaluated more than 120 families with TBDs since 2002. By incorporating detailed clinical and family history information with biospecimen collections, we have discovered the genetic causes of an advanced understanding of the complex medical challenges faced by patients and their families.
We strongly believe in the importance of collaboration and work with more than 50 clinicians and scientists in the U.S. and around the world as part of the Clinical Care Consortium of Telomere-associated Ailments (CCCTAA). Dr. Sharon Savage is the principal investigator of the TBD study at the NCI and the chair of the Team Telomere Medical Advisory Board.
The TBD registry is nested within the NCI’s inherited bone marrow failure syndromes study, which allows comparison with similar disorders to improve patient diagnosis and management. More information is available at https://marrowfailure.cancer.
If you are interested in participating, please call 1-800-518-8474 or email by clicking the link below.
Research
Clinical Guidelines
Patient/Caregiver Programs
Team Telomere believes that though we are rare we are not unique. On this page you will find a list of our partners in advocacy. Whether you are trying to learn how to become a better advocate or looking for assistance we have identified a list to help you wherever you are in your journey.
Financial Support
Miracle Flights – Provides free domestic or international travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need.
Got Transition – Helps to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
Angel Flight – Arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and healthcare organizations.
Health Well Foundation – Pedatric Assistance Fund
Julia’s Wings – The Julia’s Wings Foundation (JWF) is a 501(c)(3) non-profit organization with the mission of providing assistance to families of children with the life threatening hematological disease
Bone Marrow/Stem Cell Transplant
Be the Match (National Marrow Donor Program) – Nonprofit organizations dedicated to creating an opportunity for all patients to receive bone marrow or umbilical cord blood transplant when needed.
Bone Marrow and Cancer Foundation – Patient aid program that provides coverage for many costs associated with bone marrow, stem cell or cord blood transplant.
BMT InfoNet – The BMT InfoNet Patient Assistant Fund (PAF) assists patients and caregivers with living expenses during treatment.
Children’s Organ Transplant Association (COTA) – Provides fundraising assistance for children & young adults needing bone marrow transplants. Also advocates for marrow, organ and tissue donation
DKMS: We Delete Blood Cancer – A non-profit advocacy group that works to raise awareness of the need for donors for hematopoietic stem cell transplantation, which people with blood cancers need for treatment.
Liver Transplant
General Information for Organ Transplantation
Comprehensive Transplant Guide for Parents
Pulmonary Fibrosis
Pulmonary Fibrosis Information
American Lung Association – Pulmonary Fibrosis
Idiopathic Pulmonary Fibrosis Information
Aplastic Anemia
The Aplastic Anemia & MDS International Foundation
Education Resources
Center for Parent Information and Resources – Each state has to have it’s own Parent Training and Information Center (PTI) to train parents in Special Education law and procedures. This of course only applies to our US kids, but is truly wonderful. The PTI staff hold trainings on educational issues, will assign you an advocate to look at your child’s school situation and offer ideas and feedback, and will also support parents in school-based meetings.
Wright’s Law Website – Pete and Pam Wright have put together a very comprehensive web-site for education self-help. Though the website is initially overwhelming (it’s a little outdated stye-wise), there are all sorts of searchable topics and the information is top-notch. The Wrights do trainings all around the country on IEP and 504 law, and I’ve been able to meet them personally. I can vouch that they know what they’re talking about!
Yellow Pages for Kids – This is another off-shoot of Wright’s Law, which has education resources by state. This is a great way to find educational advocates, attorneys, training, and more.
Additional Support Progams
Peachs Neet Feet – The mission of Peach’s Neet Feet (PNF) is to provide tangible ways to be compassionate, and inspire others to engage in acts of kindness.
Our Odyssey – An organization for people ages 18-35 impacted by chronic and rare conditions
Camp Sunshine
Application Deadline: June 10, 2020
Founded in 1984, Camp Sunshine provides retreats combining respite, recreation and support, while enabling hope and promoting joy, for children with life-threatening illnesses and their families through the various stages of a child’s illness.
Camp Sunshine’s program is offered year-round and has the distinction of having been designed to serve the entire family in a retreat model. Team Telomere partnered with Camp Sunshine in 2010 to provide this retreat for families impacted by Telomere Biology Disorders. The retreat free of charge for families, offered bi-annually, and is attended by medical professionals who specialize in TBD/DCs. These medical professionals provided information about the disease with regard to their specialty and are available for family consultations during the session.
Psychosocial Support
Moderated parent groups are provided during Camp Sunshine sessions and are tailored to parents’ needs. These sessions are often the first opportunity parents have had to share their experiences with others in similar situations. The groups provide a forum in which parents can gain insight and support in dealing with illness-related issues.
Medical Support
A physician is available 24-hours a day throughout each session to support the medical needs of families attending Camp. In addition, a state-of-the-art children’s hospital is only 40 minutes from Camp, and an urgent care center and community hospital with fully staffed emergency rooms are 20 minutes away.
Volunteer Support
Camp Sunshine volunteers serve as camp counselors, and work in many areas of the program, including food service, arts and crafts, and a variety of other activities.
Family Day
Team Telomere’s Family Day program was launched in 2019 to bring community together in your region. We know how isolating the journey can be and want to give these days as a gift back to our community. Each Family Day is it’s own unique day, some are simple with dinner together while others are a full day spent with physicians and members of Team Telomere’s leadership. We are excited for the Family Days we will be hosting in 2020 that will bring community to you.
Family Day Sponsors
Locations & Ticket Information
Coeur D’ Alene, ID – Join us July 24-27, 2020 for a weekend intended for our adult caregivers. We have 8 slots open for our Women’s Weekend and our Men’s Weekend. First come first serve, must be over 18 to participate. Must be able to pay for travel to and from. All lodging, meals & events paid for by Team Telomere.
Women’s:
24th Arrive at the Lake House on beautiful Lake Pend Orielle
25th Day at the Lake House
- Caregiver support call with Dr. Sharon Savage
- Self Care with Joy Heimgartner, Mayo Clinic
26th Breakfast at Belle’s Brunch House
- CDA Power Yoga
- Hike Tubbs Hill
- Dinner at a local venue
27th Home
Men’s:
24th Arrive at Casa Stevens
25th CDA Adventures, Full Day White Water Rafting Trip
26th Hike/Fly Fishing or CDA Yoga
- Caregiver support call with Dr. Sharon Savage
27th Home
Rochester, MN – Join us October 2, 2020 at The Mayo Clinic as we join together as a community of patients, caregivers, siblings, researchers, clinicians and advocates. Team Telomere is delighted to partner with Mayo to provide breakfast, lunch, presentations and a fun-filled afternoon at The Red Barn. We look forward to an afternoon of hay rides, chatting and be sure to take a pumpkin home with you. Our 3rd annual Dine, Dance and Donate will be held in Rochester, Minnesota. Make it a true Team Telomere weekend and join us October 3, 2020 from 7-11pm at the Rochester Arts Center more info on the DDD here.
Manchester, UK – Details to be released May 1. Save the date, November 18, 2020 London and November 21, 2020 at the Wyrebank in Garstag.
Register for Family Days 2020
Legacy
Legacy was developed during 2018 with the objectives of offering:
- Support and offering a chance for those who have lost loved ones to DC a place to share unfiltered perspectives about their experience with DC.
- A point of connection to stay informed about what’s going on with the Team Telomere community, including initiative, projects, and Team Telomere’s shared vision.
- Opportunities for those who have lost loved ones to grieve and use their energy to cope and help others within theTeam Telomere community.
We’d also like to offer ourselves as resources to the rest of our community who may be at a point of making difficult choices and realizations. This often happens during times of palliative care and/or hospice. Having someone on the other end of the phone or in correspondence that was in a similar place can be very helpful. Team Telomere’s slogan at one time was “You are never alone”. Legacy is here to help others that may be coping with loss or the end stages of DC find a place where they will not feel alone when they are looking for true comfort, non-judgment and understanding from others.
To become connected with or learn more about Legacy, please contact Colleen Verkaik.
