A fun evening for a good cause in Southington, Connecticut! Please join us on November 22nd. #GBM #glioblastoma https://lnkd.in/eHYEkj_z
OurBrainBank for Glioblastoma
非盈利组织
New York，New York 858 位关注者
Moving glioblastoma from terminal to treatable, powered by patients
关于我们
Moving glioblastoma from terminal to treatable. Powered by patients. OurBrainBank is the first non-profit created by, with, and for people living with glioblastoma (GBM). GBM is an aggressive and rare brain cancer. The 5-year survival rate is 5%. OBB founder Jessica Morris (1963-2021) was diagnosed with GBM in 2016. Frustrated by the paucity of options, she brought together fellow patients, neuro-oncologists, and tech experts to form OBB. Our pilot study used a free app to help people manage GBM better by tracking symptoms and activities. We're now developing a new data collection program using passive data collected by everyday smartphone usage. Patient-driven data is the new currency in medical research and apps the new empowerment tool for patients. It could potentially have the same impact as a blockbuster new drug. OurBrainBank advocates for new and better treatments and improved quality of life for people living with GBM and their care partners. A key tool is our GBM Bill of Rights.
- 网站
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https://www.ourbrainbank.org
OurBrainBank for Glioblastoma的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- New York，New York
- 类型
- 非营利机构
- 创立
- 2017
- 领域
- nonprofit、Glioblastoma、patient driven data、brain cancer、patient-centered、mobile device app、PRO patient recording outcomes和GBM
地点
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主要
获取路线
US，New York，New York，10025
OurBrainBank for Glioblastoma员工
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Martha Wilkie
Brain Cancer Advocate
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Edward Westfall
Strategic Executive & Non-Profit Leader | Championing Team Excellence & Organizational Impact | Advocating for Public Sector Innovation | Building…
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Alex Bennett-Clemmow
Director at Humankind Research
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Tess Pilkington
Policy Communications Associate
动态
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Going to the AONN+ conference? Please visit our booth #239 to meet Executive Director Kelli Duprey and see our poster. ? “GBM Patients Across the United States Face Barriers and Information Gaps in GBM Care That May Impact Longevity and Quality of Life”
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OurBrainBank for Glioblastoma转发了
Founder & CEO @Slay Society Inc | Author (book- Daughter) | Speaker & Storyteller | GBM Advocate | Strategic Collaborator | Horticulturist | Athlete
I will never get tired of signing my own book and reminding people that there is hope and joy to be found, even inside of the pain. ?? Daughter: Embracing the Difficult Journey of Caring for a Dying Parent Without Falling Apart https://a.co/d/6revZEg Order your copy or share it with a caregiver or griever who needs a little hope or joy right now. #daughter #caregivers #gbm #glioblastoma #braincancer #caregiversupport #author #joy #hope #endoflife
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In the NYC area? Come to this benefit event featuring our main Medical Advisor Dr. Fabio Iwamoto of Columbia University. Saturday Oct. 5, Poughkeepsie. #GMB #Glioblastoma #GlioLeo https://lnkd.in/edSiuZXt
Lions Who Lunch Fundraiser 2024 — Glio Leo
glioleo.com
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OurBrainBank for Glioblastoma转发了
The Tessa Jowell Brain Cancer Mission report released today reveals a lack of critical DNA testing in the UK. Whole Genome Sequencing (WGS) is an important test to properly understand each person’s tumour.?We believe these tests are the key to unlocking personalised treatments or trials for patients today and will help transform future care. https://lnkd.in/eFvDj-3U
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OurBrainBank for Glioblastoma转发了
Resources for newly diagnosed brain tumor patients and their care partners, featuring National Brain Tumor Society, Brain Tumor Network, and Roon! ??????? #glioblastology #braincancer #braintumorawareness
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Our UK board member Nicola Nuttall's memoir is out now in the UK and US. From the publisher: "The Stars Will Still Be There?is Nicola’s raw but beautifully written account of helping her daughter make the most of her remaining time, while dealing with her own pain along with that of her younger daughter Gracie and husband, Mark. This is a heartbreaking, life-changing memoir that reveals the fragility of humans, the power of love and why we should all ‘Be More Laura’ every single day." #GBM #glioblastoma #BeMoreLaura #TheStarsWillStillBeThere https://lnkd.in/eGP4TQ7q
"The Stars Will Still Be There: What my daughter taught me about love, life and loss" — memoir by OurBrainBank board member Nicola Nuttall - OurBrainBank
https://www.ourbrainbank.org
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Thank you Sophie Kinsella for telling your glioblastoma story.
#WarriorWednesday: Sophie Kinsella, the renowned author of the popular "Shopaholic" book series, was diagnosed with #glioblastoma in 2022. Despite the aggressive nature of this brain tumor, Sophie has faced her journey with incredible strength and positivity. When Sophie first noticed symptoms like stumbling, imbalance, and severe headaches, she sought medical help, and the tumor was discovered. She underwent an intense eight-hour surgery to remove as much of the cancer as possible, followed by rigorous rehab to regain her strength and mobility. Throughout her treatment, which includes ongoing chemotherapy, Sophie has remained optimistic. Her husband, Henry, has been her steadfast caregiver and support, embodying the vow of "in sickness and in health." Sophie's journey is marked by her triumphant spirit and dedication to her family. She recently announced a new novel inspired by her experience, titled "What Does It Feel Like," which offers a personal glimpse into facing a devastating diagnosis with hope and love. ?? Read Sophie's story: https://loom.ly/EY2Z8iQ
'Shopaholic' author Sophie Kinsella opens up about brain tumor journey
goodmorningamerica.com
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OurBrainBank for Glioblastoma转发了
If you've ever heard me speak, then you know that I'm an advocate for early palliative care intervention close to the point of diagnosis for complex conditions like cancer. This is a terrific visual! #palliativecare
Perception vs Reality Palliative care.. it’s more than you think. The involvement of palliative care services mean more care, not less. With a focus on a patient’s overall #wellbeing and #quality of life. Supporting individuals with a life-threatening disease as well as their family members. #palliativecare #wecare #holisticapproach Infographic credits: https://lnkd.in/gZJK9HSx
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How accessible are Neuropathologists in your state? Our latest dive deep into the availability of ABMS certified Neuropathologists across the U.S. sheds light on "neuro-path deserts," where access to a coordinated specialized medical team for GBM treatment is scarce. This map shows the geographic distribution of Neuropathologists where there are several states with few to zero practicing board certified neuropathologists, whose responsibilities include providing precise diagnostic information that help to ensure patients receive the most appropriate and effective treatment for GBM. TAKE OUR SURVEY if you or a loved one is currently living with GBM, or if you've lost someone to GBM in the past year, and you reside in the U.S. (18+). Survey Link: https://lnkd.in/dvWYQv8m If you need help accessing the survey or want to complete the survey by phone, please email [email protected] or call/text +1 (909) 274-9486?. Shares are appreciated ??
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