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.

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.gov/disorders/telomere.html. 

If you are interested in participating, please call 1-800-518-8474 or email by clicking the link below.

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

Liver Disease Toolkit

Liver Transplant Resources

American Liver Foundation

UC San Diego Liver Transplant

Medication Alarm App

Medication Assistance

Pulmonary Fibrosis

Pulmonary Fibrosis Foundation

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

Sing Me a Story

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.

Recreational activities allow children and adults to relax and make connections with other families impacted by TBD/DCs. While at Camp Sunshine, each family stays in their own suite, equipped with two twin beds, bunk beds, a futon, full bathroom, microwave oven, and refrigerator. Meals are provided in the dining room and are occasions for socializing and unwinding.

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 

Register here

 

Australia Virtual Mini-Family Day

Calling all Pacific Team Telomere families, researchers & clinicians! Join Dr. Suneet Agarwal and Katie Stevens for our first Virtual Family Day, Saturday, 24, October, 2020, 8am in Australia
We will have presentations the first hour and then will move into 30 minute breakout sessions one for adults and one for kids ages 10-15, 15-18, meeting back together for the final 30 minutes.

Register here

 

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

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.

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