The Children’s Tumor Foundation is one of AllStripes’ earliest foundation partners and was truly a pioneer on this platform to include patients more actively in research.
“It is time for patients to gain more power over their health, and AllStripes supports this,” said Pamela Knight, the Clinical Director of the Children’s Tumor Foundation, also known as CTF.
CTF, founded in 1978, believes strongly in the value of patients’ voices and inclusion in the decision-making process, and our partnership was born out of a shared passion for moving neurofibromatosis research forward.
There are three types of neurofibromatosis (NF), a rare condition that causes tumors to grow on nerves. Onno Faber, AllStripes’ Co-founder, is an NF2 patient and has been an active voice in the NF community, championing the need for a patient-centered platform that brings together data from across the community to fuel multiple research projects.
The partnership has helped people become more aware of their rights as patients, Pamela said, and “AllStripes is pursuing something people had claimed was not technically feasible - harmonizing medical records” from many different sources.
CTF has a strong research focus, but also works on spreading awareness and improving care for the NF community. NF causes tumors to grow on nerves — it is complex and manifests differently for each individual, but the NF community is adaptable, brave and devoted to one another, according to Pamela.
“Being part of a community focused on reducing suffering feels meaningful,” she said.
This is exemplified every year when CTF brings together hundreds of people from the NF community through the NF patient forum.
“It feels like a big family, with mutual respect and admiration for each other and a shared determination,” Pamela said.
To serve this community, the organization aims to make research as accessible as possible. In addition to working with AllStripes, CTF encourages open science and collaboration through their patient registry and tissue biobank, because these research tools can speed up the progress of clinical trial design and development and prevent the duplication of efforts.
Pamela believes that “a foundation can be a true research partner by creating research consortia and developing shared tools for research.”
In April 2020, the U.S. Food and Drug Administration approved the first drug for NF1, one of the three types of NF and a condition which affects 1 in 3,000 people worldwide.
This is an achievement for the entire NF community and CTF aims to use the learnings from this successful launch and drug approval as they continue to develop new treatments for NF.
Several initiatives are being planned by CTF to attract a new generation of scientists to research NF1, NF2 and schwannomatosis not only in the U.S. but also globally, as they expand to Europe.
CTF offers a variety of resources for the NF community. For the latest news, research and NF-related community events, visit CTF’s website and social media channels.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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