Educational Information
We are unwavering in our commitment to the families facing a DIPG, ensuring they have educational information to best understand the diagnosis. We understand the devastation this diagnosis brings and we hope to offer families support during this journey.
We distribute DIPG Informational Pre-loaded iPads to DIPG families through children’s hospitals around the country.
On behalf of the Marc Jr Foundation, we present you this gift. This may be used in any way you choose that can benefit you and your child. With the trauma of being informed that a child has a DIPG brain tumor come many expenses and endless searching for information. Whether it is monetary, a tablet, or another gift, our foundation is honored to help you in some way. It is a hard reality that a parent or caretaker should endure the pain and grief that accompany a DIPG, and to see a young beautiful child suffer.
Marc Jr Foundation has parents, relatives, and friends that have lost children to a DIPG. We have experience with the challenges and lack of information of this disease. We have searched within our own experiences to find a mission that can best help families, caregivers, and researchers affected by this very rare diagnosis.
In the future, if you feel any reason to reach out to us for continued support regarding this disease, we are always open to share our own experiences and knowledge about the life changing struggle that you are facing.
Today, the Marc Jr Foundation’s educational iPads are pre-loaded with resources to help parents navigate this difficult diagnosis. The Foundation is working with doctors, social workers, and other Foundations, as we realized how important it is to have information readily available regarding treatment and support for the families facing a DIPG. The Marc Jr pre-loaded iPads will have applications including, but not limited to, the following:
- Butterfly
Children and their families enrolled in The Butterfly Program are able to access supportive services including nursing, social work, chaplaincy, and expressive therapy while receiving curative and therapeutic medical interventions aligned with their goals of care. The focus of the program is solely on the quality of life for the child, and their families. - Children With Limited Life Waiver (Denver only)
- Children’s Brain Tumor Foundation
The Family 2 Family (F2F) Mentor Program connects caregiver, survivor, and bereaved caregiver mentors to families who are seeking peer support. - Super Sibs
Sibling Comfort and Care – Our SuperSibs Comfort and Care Program provides tools to help siblings during and long after this life challenge. - ACCO Free Books
Offer quality materials for children and families who are dealing with childhood cancer.
Recommended – Understanding the Journey: A Parent’s Guide to DIPG - DIPG Warrior
DIPG Warrior is The Cure Starts Now’s way to help your family and friends through:awareness, support, fundraising, and more than anything, honoring your DIPG Warrior. - DIPG Registry
The International Diffuse Intrinsic Pontine Glioma (DIPG) Registry is a collaborative effort by physicians and researchers from North America, Europe, and Australia to centralize and standardize the collection of clinical data and tumor samples from DIPG patients. The goal of this effort is to support innovative research and ultimately find acure for DIPG. - The Children’s Brain Tumor Tissue Consortium
Bringing together leaders in pediatric brain cancer research through cutting-edge technology to innovate, collaborate and share data. - Mealtrain
mealtrain.com simplifies the organization of meal giving around significant life events. We strive to simplify and promote interpersonal relationships between friends, families, and neighbors through meals. - Cancer Support Community
Providing comprehensive care – including counseling, support groups, nutrition, exercise and education – for cancer patients and their loved ones. - Caringbridge
A CaringBridge website is a personal health journal, rallying friends and family during any type of health journey. Start a free CaringBridge website today. - Clinicaltrials.gov
ClinicalTrials.gov is a registry of clinical trials. It is run by the United States National Library of Medicine (NLM) at the National Institutes of Health, and is the largest clinical trials database - DIPG.org
Offer facts regarding dealing with a Diagnosis of DIPG - Monkey In My Chair
Monkey in My Chair is a program originally developed in honor of Chloe Watson Feyerherm for pre-school and elementary aged children who are away from school because of a cancer diagnosis. As a result of Chloe’s experience, her mother, teachers and community got together to develop the Monkey In My Chair program through the efforts of their newly established charity, the Love, Chloe Foundation. In 2011, in an attempt to have the program complement cancer research efforts, the Love, Chloe Foundation partnered with The Cure Starts Now Foundation to offer the program to a wider audience, thus increasing both awareness and donations to not only support the program but also fund the cure for cancer.
Recommended
- Google Calendar
Google Calendar application allows users to create personal or public calendars and share calendars. Calendar sharing means that it’s easier to share information such as doctor appointments and invitations with family members across their devices. - One Note
OneNote is your digital notebook for capturing and organizing everything across your devices. Jot down your ideas, keep track of doctors and meeting notes, clips from the web, or make a to-do list, store voice files to refer to later as well as draw and sketch your questions or ideas. - Office Lens
Office Lens allows you to scan and import business cards from your iPad to OneNote. It will save as a picture and read the business cards and have them converted into digital contacts in your address books- great for when you’re going between appointments and you do not want to misplace a business card. - Facebook Groups
DIPG Parents Only Sanctuary
DIPG Awareness for Family and Friends
DIPG Research
Providing Support
Through the hard work and dedication of DIPG parents and volunteers this iPad has been provide to you in the hopes of offering “social support”. Some apps will offer informational support while others will be gathering data or the latest news on DIPG. And others will give practical help like driving to and from doctor appointments, cooking, cleaning, grocery shopping and child care. We offer you this information in the hopes it will be viewed as help given to you about things we believe have given our child hope for a better quality of life and we hope it makes you feel loved, cared for and understood.
Taking Care of Yourself
Watching your child battle cancer can, in so many ways, be as hard as fighting it yourself. It can be painful to see them struggle and you may hide your feelings of anger, fear or helplessness because you don’t want to upset them. As members of your DIPG community, we encourage you to talk about your feelings. Connecting with other DIPG families can be a huge source of support, so we encourage you to please consider visiting and/or joining the suggested DIPG/cancer supporting communities (see above).
If you have questions about any of our programs, please reach out to us at [email protected]. We will be happy to speak to you.