Resources
One of the more difficult aspects of families and patients fighting a rare disease is finding the right resources. Below you will find information on the most current research and studies, physicians resources, support groups and Team Telomere’s Camp Sunshine.
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.
Family Stories
Our Families Stories blog is being updated. If you have a story or experience you would like to share with others, or if you have an update for your story, please contact us.
Research
Team Telomere wants to make sure you are an educated and empowered advocate, this means having access to the most up-to-date information. To find current research and clinical trials you can visit the US National Library of Medicine’s website. You can also see what the Team Telomere grant has funded by visiting our Physician Resource page.
Clinical Guidelines
The clinical care guidelines for Telomere Biology Disorder-associated medical complications provide background and general clinical guidance as we await comprehensive clinical trials on the management of the multiple complications in TBD/DC.
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
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.
Mini 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 2021 (Due to COVID-19) that will bring community to you.
In its place we will hosting Mini-Family Days. We are excited to continue to reach our community however we can, whether that be virtually or via small groups practicing social distancing. Please join us in whatever capacity you feel comfortable. 2020 can’t keep us down!
Family Day Sponsors
Locations & Ticket Information
San Francisco, CA Virtual Mini-Family Day
October 7, 2020 4:30pmPT
Australia Virtual Mini-Family Day
Denver, CO Mini-Family Day
November 7, 2020 4pm Postponed until Spring 2021
Join Jeni Colter at Hacienda Colorado, Westminster for an evening together, space is limited to 6, first come first serve. Please observe all social distance practice in accordance with the restaurant. 2 caregivers OR 1 caregiver 1 person w/TBD.
San Diego, CA Mini-Family Day
November 7, 2020
TBD
Rochester, MN Mini-Family Day
December 5, 2020 6pmCT
TBD
Dallas, TX Mini-Family Day
TBD
Pittsburgh, PA Mini-Family Day
TBD
Register for Family Days 2021