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X-WR-CALDESC:Events for The Life Raft Group
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DTSTART;TZID=America/New_York:20220706T130000
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UID:10000196-1657112400-1657116000@liferaftgroup.org
SUMMARY:Virtual Caregiver Support Group
DESCRIPTION: A Bi-Weekly Virtual Support Group for GIST Caregivers\nHeld on the first & third Wednesdays of the month\nAs we continue to navigate this uncertain time together\, we want to offer you a little extra support. LRG has a twice monthly support group for the caregivers facilitated by Marlene Nei\, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States\, we will use an electronic platform to gather as a group. We will talk about all the feelings you might be experiencing\, both in relation to GIST\, and COVID-19. \nWe will share our stories\, if you are comfortable\, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. The group will be a safe space not only to feel supported by your fellow caregivers\, but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information. \n\nPlease email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.\n\nAbout the Group Leader:\nMarlene Nei\, GIST Caregiver\nAs an active member of the Life Raft Group\, Marlene advocates for the needs of the caregiver community because she feels they are an underrepresented group. It is her mission to advocate for the entire GIST community making sure they are equipped with the appropriate resources on their GIST journey.
URL:https://liferaftgroup.org/event/virtual-caregiver-support-group-2022-1/2022-07-06/
LOCATION:NJ
CATEGORIES:Events
ATTACH;FMTTYPE=image/jpeg:https://liferaftgroup.org/wp-content/uploads/2021/06/Caregiver-Support-Group.jpg
ORGANIZER;CN="Diana Nieves":MAILTO:dnieves@liferaftgroup.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220713T120000
DTEND;TZID=America/New_York:20220713T130000
DTSTAMP:20220629T233740Z
CREATED:20220629T193124Z
LAST-MODIFIED:20220629T233740Z
UID:10000236-1657713600-1657717200@liferaftgroup.org
SUMMARY:GIST Awareness Day Webinar: SDH Updates and Stories
DESCRIPTION:GIST Awareness Day (GAD)\, July 13th)\, is a time where GIST experts\, patients\, caregivers can come together to educate the public about this disease and advocate towards finding a cure. The Life Raft Group invites GIST patients and caregivers to celebrate GAD with us on July 13th at 12pm. During this virtual event\, Dr. John Glod\, Clinical Director of the Pediatric Oncology Branch in the Center for Cancer Research at National Cancer Institute\, will discuss updates from the NIH Pediatric & Wildtype GIST Clinic\, which is a part of My Pediatric and Adult Rare Tumor Network (MyPART). Immediately following Dr. Glod’s presentation\, pediatric GIST patient Lleyton Schelesky will share his GIST story. After the presentations\, there will be time for a Q&A. \nIf you have questions about SDH-deficient GIST and would like to submit them prior to the webinar\, please send them to Sara Rothschild at srothschild@liferaftgroup.org. \nREGISTERAbout the Presenters\nJohn Glod\, MD\, PhD\nAssociate Research Physician\, National Cancer Institute\, Pediatric Oncology Branch \nDr. Glod obtained his M.D. and Ph.D. from the University of Colorado in Denver and trained in pediatrics and pediatric oncology at Cincinnati Children’s Hospital\, Johns Hopkins Hospital\, and the Pediatric Oncology Branch of the NCI.  Following an fellowship in neuro-oncology at the NCI\, Dr. Glod served as faculty in the departments of pediatrics and pharmacology at Rutgers Cancer Institute of New Jersey. Dr. Glod joined the Pharmacology and Experimental Therapeutics Section in 2013.  His research interests focus on understanding the biology of rare pediatric solid tumors and exploring new therapies for patients with these diseases. \n\nLleyton Schelesky\nPatient Advocate \nLleyton was diagnosed with GIST at age 12. Now a young adult\, Lleyton will share his experience with SDH-deficient GIST.
URL:https://liferaftgroup.org/event/gist-awareness-day-2022/
LOCATION:NJ
CATEGORIES:Events
ORGANIZER;CN="Sara Rothschild":MAILTO:srothschild@liferaftgroup.org
END:VEVENT
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DTSTART;TZID=America/New_York:20220720T130000
DTEND;TZID=America/New_York:20220720T140000
DTSTAMP:20221230T174626Z
CREATED:20211230T190313Z
LAST-MODIFIED:20221230T174626Z
UID:10000185-1658322000-1658325600@liferaftgroup.org
SUMMARY:Virtual Caregiver Support Group
DESCRIPTION: A Bi-Weekly Virtual Support Group for GIST Caregivers\nHeld on the first & third Wednesdays of the month\nAs we continue to navigate this uncertain time together\, we want to offer you a little extra support. LRG has a twice monthly support group for the caregivers facilitated by Marlene Nei\, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States\, we will use an electronic platform to gather as a group. We will talk about all the feelings you might be experiencing\, both in relation to GIST\, and COVID-19. \nWe will share our stories\, if you are comfortable\, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. The group will be a safe space not only to feel supported by your fellow caregivers\, but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information. \n\nPlease email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.\n\nAbout the Group Leader:\nMarlene Nei\, GIST Caregiver\nAs an active member of the Life Raft Group\, Marlene advocates for the needs of the caregiver community because she feels they are an underrepresented group. It is her mission to advocate for the entire GIST community making sure they are equipped with the appropriate resources on their GIST journey.
URL:https://liferaftgroup.org/event/virtual-caregiver-support-group-2022-2/2022-07-20/
LOCATION:NJ
CATEGORIES:Events
ATTACH;FMTTYPE=image/jpeg:https://liferaftgroup.org/wp-content/uploads/2021/06/Caregiver-Support-Group.jpg
ORGANIZER;CN="Diana Nieves":MAILTO:dnieves@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220729
DTEND;VALUE=DATE:20220801
DTSTAMP:20220721T180545Z
CREATED:20190424T181544Z
LAST-MODIFIED:20220721T180545Z
UID:10000027-1659052800-1659311999@liferaftgroup.org
SUMMARY:Life Fest New Orleans
DESCRIPTION:Life Fest New Orleans\n July 29th-31st\, 2022\nIf you have any questions regarding Life Fest\, please email Jessica Nowak at jnowak@liferaftgroup.org \nREGISTERLife Fest is a unique event where hundreds of patients and caregivers come together for a weekend to interact with each other and the medical and scientific communities that serve them. Faced with a rare form of cancer\, GIST patients have a great need for information about this disease\, particularly as the science evolves and our understanding reveals a complex set of subtypes of GIST\, each responding differently to available treatments. Each year brings a wealth of new information\, and patients are eager to learn about the latest treatments. \nLife Fest workshops provide patients with emerging medical information\, and they come away with a deeper knowledge of the disease\, treatments\, and side-effect management. They find hope in knowing the scientific community is working toward a cure\, and hope is such a vital asset as they struggle day by day for survival. \nThe Life Raft Group emerged in recognition of the tremendous need for support in the GIST community. Life Fest 2022 will provide patients and caregivers with that support. Coming together with fellow patients from all walks of life from around the world is a meaningful and powerful experience. \nIn addition to our traditional educational workshops\, Life Fest 2022 will feature scientific presentations highlighting the newest research and the latest treatments. Additionally\, other disease advocacy groups will be invited to present the work of their organizations\, and share lessons learned. \nReasons to attend Life Fest \nProgram Highlights \nWhere to Eat in NOLA \nSights & Sounds of NOLA  \nClick to view online and print agenda \n \nThank you to our Life Fest Sponsors!
URL:https://liferaftgroup.org/event/lifefest2022/
LOCATION:NJ
CATEGORIES:Education,Events
ATTACH;FMTTYPE=image/png:https://liferaftgroup.org/wp-content/uploads/2019/04/life-fest-2022.png
ORGANIZER;CN="The Life Raft Group":MAILTO:liferaft@liferaftgroup.org
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