Presentation by Sara Selig, MD, MPH. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Patient advocacy groups play an important role in supporting rare cancer patients and influencing healthcare policy and research. They provide crucial information to help patients make informed decisions. They also advocate for patient needs and priorities to be addressed in policy and research. Advocacy groups can contribute to research by identifying important issues, helping with patient recruitment and monitoring, and ensuring research results are disseminated. International rare cancer advocacy organizations collaborate to support patients globally.
Crowdsourcing Lay Summaries: Bridging the Gap in Health Researchmonicaduke
Liz Lyon presentsCrowdsourcing Lay Summaries: Bridging the Gap in Health Research at the Patients Participate !Workshop at the British Library, 17th June 2011
This document summarizes a master's thesis from Eastern Illinois University that studied the effectiveness of an intrusive advising program on students placed on academic probation. The thesis, authored by Christie Ann Cruise, examined an intrusive advising program where students met multiple times with an advisor and found that it helped improve academic performance and led to a lower probation rate compared to students not in the intrusive advising program. The full thesis is available online through the university's institutional repository called The Keep.
Mayo Clinic Emergency Medicine Program Overviewmayoemblog
The document describes the Mayo Clinic Emergency Medicine residency program. It offers comprehensive training across multiple campuses, with opportunities for research, procedures, simulation, and diverse patient populations. Residents receive protected education time and feedback is used to continuously improve the program. The program aims to train residents for clinical and academic excellence who can practice in any setting and advance the field of emergency medicine internationally.
Funding for research and career development through the Strategic Opportuniti...CTSI at UCSF
The SOS Funding Research program provides about $1 million per year to support research grants for UCSF faculty across all schools. It has helped increase overall research funding at UCSF to over $12.3 million total and 421 total awards. Statistics show that from 2001-2005, SOS awarded $5.5 million which subsequently helped recruit over $44 million in additional funding, mostly from government sources. Quotes from grant recipients indicate that SOS funding was critical for obtaining preliminary data and publications needed to achieve subsequent larger grants. SOS has also contributed to advances in standards of care, new policies, and medical technologies.
Patient advocacy groups play an important role in supporting rare cancer patients and influencing healthcare policy and research. They provide crucial information to help patients make informed decisions. They also advocate for patient needs and priorities to be addressed in policy and research. Advocacy groups can contribute to research by identifying important issues, helping with patient recruitment and monitoring, and ensuring research results are disseminated. International rare cancer advocacy organizations collaborate to support patients globally.
Crowdsourcing Lay Summaries: Bridging the Gap in Health Researchmonicaduke
Liz Lyon presentsCrowdsourcing Lay Summaries: Bridging the Gap in Health Research at the Patients Participate !Workshop at the British Library, 17th June 2011
This document summarizes a master's thesis from Eastern Illinois University that studied the effectiveness of an intrusive advising program on students placed on academic probation. The thesis, authored by Christie Ann Cruise, examined an intrusive advising program where students met multiple times with an advisor and found that it helped improve academic performance and led to a lower probation rate compared to students not in the intrusive advising program. The full thesis is available online through the university's institutional repository called The Keep.
Mayo Clinic Emergency Medicine Program Overviewmayoemblog
The document describes the Mayo Clinic Emergency Medicine residency program. It offers comprehensive training across multiple campuses, with opportunities for research, procedures, simulation, and diverse patient populations. Residents receive protected education time and feedback is used to continuously improve the program. The program aims to train residents for clinical and academic excellence who can practice in any setting and advance the field of emergency medicine internationally.
Funding for research and career development through the Strategic Opportuniti...CTSI at UCSF
The SOS Funding Research program provides about $1 million per year to support research grants for UCSF faculty across all schools. It has helped increase overall research funding at UCSF to over $12.3 million total and 421 total awards. Statistics show that from 2001-2005, SOS awarded $5.5 million which subsequently helped recruit over $44 million in additional funding, mostly from government sources. Quotes from grant recipients indicate that SOS funding was critical for obtaining preliminary data and publications needed to achieve subsequent larger grants. SOS has also contributed to advances in standards of care, new policies, and medical technologies.
According to the American Cancer Society there are abou t2.9million breast cancer survivors in the, USA, including women who are still being treated. Underserved and minority women have the lowest survival and fastest-rising incidence rates.
At our Cancer Care Center in Beloit, Wisconsin we have the most technologically advanced levels of Cancer Surgery. Call our Cancer Care Center at 608-364-5253
This document summarizes discussions from a workshop on developing capacity for gene variant data sharing in low and middle income countries. It outlines sessions on understanding the challenges, the current situations in different global regions, ELSI issues, funding and partnerships. Key outcomes include practical steps to develop LOVD databases, recommendations on hemoglobinopathies, and plans to facilitate networks through WHO collaborating centers and a future meeting in sub-Saharan Africa. The overall goal is to strengthen global collaboration and data sharing for conditions like sickle cell disease and thalassemias.
A graduate of the University of Tennessee College of Medicine, Dr. William B. Clark treats patients at ENT Associates of Northwest Florida. Active in charitable giving, Dr. William B. Clark contributes to the American Cancer Society (ACS), which hosts the Coaches vs. Cancer program.
The document discusses uveal melanoma (UM) in Ireland. It notes that Ireland has the highest incidence rate of UM in the world at 17.2 cases per million population. An Irish Ocular Oncology Service was established in 2010 to treat UM patients in Dublin, as previously most were sent to Liverpool, UK for treatment. OcuMel Irl was formed in 2017 by three founding members to provide information, support, and advocacy for UM patients and their families, as there was a lack of verbal or written information from the health service. OcuMel Irl's goals are to continue advocating for UM patients, create awareness, support research collaborations, and work towards standardizing surveillance and treatment pathways.
The Dermatology Foundation Research Awards Program Erin Gardner
Dr. Erin Gardner is the director and sole physician at Dermatology Specialists of Saint Louis, a comprehensive medical dermatology practice with a special focus on skin cancer care. Dr. Erin Gardner also holds membership with the Dermatology Foundation, a nonprofit organization offering research support for the next generation of dermatology teachers and researchers.
Through its Research
The AED Premedical Honor Society’s National ConventionDr. Lamont Tyler
As the medical director of the OSF SJMC PromptCare, Dr. Lamont Tyler is a leading urgent care and acute care practitioner. While earning his BS degree from Loyola University of Chicago with a focus in biology, Dr. Lamont Tyler served as a member of the Alpha Epsilon Delta (AED) Premedical Honor Society and also made the Dean’s List.
The document highlights the efforts of an organization's COVID response, including administering 180,000 tests and 50,000 vaccines, opening the largest vaccination site in East LA, distributing 700,000 units of PPE and food to 6 million pounds, supporting families and students through education and financial programs, covering $97 million in COVID costs and distributing $26 million in emergency funds, and providing 25,000 free hotel nights for caregivers.
Living with a terminal disease is never easy, but when it is also a rare disease such as mesothelioma, it can be even more challenging as there are additional obstacles to overcome like finding reliable resources, connecting with a specialist and learning about the latest treatment options.
Technological advances have empowered patients to become more informed consumers of healthcare. Accountable Care Organizations aim to improve care quality while reducing costs through care coordination across providers. Medical tourism has grown as an option with lower costs and the attraction of combining travel with care. However, care received abroad may not meet domestic standards and place additional burdens on the local healthcare system.
The document discusses the role of civil society organizations like the European Cancer Patient Coalition (ECPC) in health promotion campaigns for prostate cancer. It notes that ECPC represents over 400 cancer patient organizations across Europe and believes patients should be partners in the fight against cancer. It outlines how civil society can lead advocacy campaigns, disseminate information, and help implement health programs. It argues that policy should involve patients, care should be multidisciplinary and patient-centered, and survivorship plans are important to empower individuals. ECPC will co-host an advocacy session at a urology conference to build capacity for patient advocacy groups.
Leroy blauwet barriers and opportunities to the implementation of a comprehe...gosneyjr
This document discusses barriers and opportunities for implementing comprehensive rehabilitation strategies in post-earthquake Haiti. It notes limited rehabilitation infrastructure and disparities for people with disabilities. However, it also saw positive influences from peer mentoring and international disability rights pressure. The document recommends urgent comprehensive rehabilitation models with links between community and institution-based care, and involving people with disabilities. It advocates implementing strategies in partnership with Haiti's Ministry of Health for sustainability.
What do patients' need, right now, at this very given moment? It's an excellent question, which--if we mean to actually achieve--we should narrow down to a few concise and relevant points.
Paramount to the deconstruction of patient needs is understanding what the goal for patients is. This goal isn't just to live. It's to live well. It's to contribute to and enjoy the world -- to have hike the mountains, enjoy the breeze of the oceans, bask in the heat, laugh with friends, love our partners, and grow as a person.
Now, moving slowly from the goal to the respective problems. We have patients who are ill once or twice and are then relatively healthy, healthy patients who see their doctor once a year for a checkup, chronically ill people who live for the rest of their life with chronic conditions like Crohn's or Hyperthyroidism, and there are terminal patients dealing with life threatening illnesses. Certainly, there are many many more subsections of patients.
The needs for each of these segments are varient - varying along a spectrum with healthy patients needing less than the chronic and the chronic needing less than the terminal. Some people happen to be further along this spectrum than others. At the end of this presentation, we announced a survey to enumerate and articulate these needs across these various spectrums. It is our hope that this survey helps illustrate these pieces along the timeline, allowing us to focus on perfecting each piece.
This document discusses the goals and responsibilities of Europa Uomo, the European Prostate Cancer Coalition. It aims to give all European men access to innovative and personalized treatment for prostate cancer and improve quality of life for survivors. Europa Uomo works with patients and stakeholders across more than 25 member states to raise awareness of prostate cancer and ensure equitable access to optimal diagnosis and treatment for all European patients.
Healthcare providers and leaders will address three types of silences in healthcare: organizational silence, patient-related silence, and provider to provider silence.
Read More: www.conquersilence.ca
A Singaporean doctor, Choon Chiat Oh, traveled to New York to shadow Dr. John Carucci through the ASDS International Preceptorship Program. Dr. Oh has interests in Mohs micrographic surgery and skin cancers in immunocompromised patients. He observed Dr. Carucci's skin cancer practice and transplant dermatology experiences. Dr. Oh assisted with Mohs surgery cases in the morning and consultations in the afternoon, learning about tissue processing, closures, and more. He found Dr. Carucci to be an excellent mentor and source of inspiration for his patients, colleagues, and students. Dr. Oh called his visit a valuable learning experience.
Central PA 2014 Healthcare Odyssey PanelistsBenjamin Pease
The document outlines the agenda for the 2014 Healthcare Odyssey conference, including panels on CEO issues, para medicine, social media, and long term care. It also discusses a keynote presentation on the Choosing Wisely initiative, which challenges medical specialties to identify unnecessary treatments and tests. The initiative aims to empower patients and encourage evidence-based medicine, though questions remain around its realistic impact. The agenda then lists moderator and panelist names and titles for each session.
This document outlines the mission and initiatives of CURE OM, an organization dedicated to supporting research for ocular melanoma. Their mission is to support research to develop effective treatments and a cure for ocular melanoma through collaborations. They provide various programs for patients including an annual symposium, webinars, support groups and educational materials. CURE OM also funds research through grants and scientific meetings to bring experts together to advance the field. Their goals include continuing to develop a patient registry and expanding education, support and funding for ocular melanoma research.
Global Academic Program of MD Anderson Cancer Centerspa718
The Global Academic Programs (GAP) at MD Anderson Cancer Center supports the institution's mission of eliminating cancer globally through its Sister Institution Network of 33 cancer centers in 24 countries. GAP facilitates collaboration between MD Anderson and its sister institutions across key areas of patient care, research, prevention, and education. Notable activities include referring international patients for second opinions and treatment through the Sister Institution Referral Assistance Center, funding collaborative research projects through the Sister Institution Network Fund, increasing global cancer publications and clinical trials, implementing tobacco control programs, and convening an annual conference to foster networking.
According to the American Cancer Society there are abou t2.9million breast cancer survivors in the, USA, including women who are still being treated. Underserved and minority women have the lowest survival and fastest-rising incidence rates.
At our Cancer Care Center in Beloit, Wisconsin we have the most technologically advanced levels of Cancer Surgery. Call our Cancer Care Center at 608-364-5253
This document summarizes discussions from a workshop on developing capacity for gene variant data sharing in low and middle income countries. It outlines sessions on understanding the challenges, the current situations in different global regions, ELSI issues, funding and partnerships. Key outcomes include practical steps to develop LOVD databases, recommendations on hemoglobinopathies, and plans to facilitate networks through WHO collaborating centers and a future meeting in sub-Saharan Africa. The overall goal is to strengthen global collaboration and data sharing for conditions like sickle cell disease and thalassemias.
A graduate of the University of Tennessee College of Medicine, Dr. William B. Clark treats patients at ENT Associates of Northwest Florida. Active in charitable giving, Dr. William B. Clark contributes to the American Cancer Society (ACS), which hosts the Coaches vs. Cancer program.
The document discusses uveal melanoma (UM) in Ireland. It notes that Ireland has the highest incidence rate of UM in the world at 17.2 cases per million population. An Irish Ocular Oncology Service was established in 2010 to treat UM patients in Dublin, as previously most were sent to Liverpool, UK for treatment. OcuMel Irl was formed in 2017 by three founding members to provide information, support, and advocacy for UM patients and their families, as there was a lack of verbal or written information from the health service. OcuMel Irl's goals are to continue advocating for UM patients, create awareness, support research collaborations, and work towards standardizing surveillance and treatment pathways.
The Dermatology Foundation Research Awards Program Erin Gardner
Dr. Erin Gardner is the director and sole physician at Dermatology Specialists of Saint Louis, a comprehensive medical dermatology practice with a special focus on skin cancer care. Dr. Erin Gardner also holds membership with the Dermatology Foundation, a nonprofit organization offering research support for the next generation of dermatology teachers and researchers.
Through its Research
The AED Premedical Honor Society’s National ConventionDr. Lamont Tyler
As the medical director of the OSF SJMC PromptCare, Dr. Lamont Tyler is a leading urgent care and acute care practitioner. While earning his BS degree from Loyola University of Chicago with a focus in biology, Dr. Lamont Tyler served as a member of the Alpha Epsilon Delta (AED) Premedical Honor Society and also made the Dean’s List.
The document highlights the efforts of an organization's COVID response, including administering 180,000 tests and 50,000 vaccines, opening the largest vaccination site in East LA, distributing 700,000 units of PPE and food to 6 million pounds, supporting families and students through education and financial programs, covering $97 million in COVID costs and distributing $26 million in emergency funds, and providing 25,000 free hotel nights for caregivers.
Living with a terminal disease is never easy, but when it is also a rare disease such as mesothelioma, it can be even more challenging as there are additional obstacles to overcome like finding reliable resources, connecting with a specialist and learning about the latest treatment options.
Technological advances have empowered patients to become more informed consumers of healthcare. Accountable Care Organizations aim to improve care quality while reducing costs through care coordination across providers. Medical tourism has grown as an option with lower costs and the attraction of combining travel with care. However, care received abroad may not meet domestic standards and place additional burdens on the local healthcare system.
The document discusses the role of civil society organizations like the European Cancer Patient Coalition (ECPC) in health promotion campaigns for prostate cancer. It notes that ECPC represents over 400 cancer patient organizations across Europe and believes patients should be partners in the fight against cancer. It outlines how civil society can lead advocacy campaigns, disseminate information, and help implement health programs. It argues that policy should involve patients, care should be multidisciplinary and patient-centered, and survivorship plans are important to empower individuals. ECPC will co-host an advocacy session at a urology conference to build capacity for patient advocacy groups.
Leroy blauwet barriers and opportunities to the implementation of a comprehe...gosneyjr
This document discusses barriers and opportunities for implementing comprehensive rehabilitation strategies in post-earthquake Haiti. It notes limited rehabilitation infrastructure and disparities for people with disabilities. However, it also saw positive influences from peer mentoring and international disability rights pressure. The document recommends urgent comprehensive rehabilitation models with links between community and institution-based care, and involving people with disabilities. It advocates implementing strategies in partnership with Haiti's Ministry of Health for sustainability.
What do patients' need, right now, at this very given moment? It's an excellent question, which--if we mean to actually achieve--we should narrow down to a few concise and relevant points.
Paramount to the deconstruction of patient needs is understanding what the goal for patients is. This goal isn't just to live. It's to live well. It's to contribute to and enjoy the world -- to have hike the mountains, enjoy the breeze of the oceans, bask in the heat, laugh with friends, love our partners, and grow as a person.
Now, moving slowly from the goal to the respective problems. We have patients who are ill once or twice and are then relatively healthy, healthy patients who see their doctor once a year for a checkup, chronically ill people who live for the rest of their life with chronic conditions like Crohn's or Hyperthyroidism, and there are terminal patients dealing with life threatening illnesses. Certainly, there are many many more subsections of patients.
The needs for each of these segments are varient - varying along a spectrum with healthy patients needing less than the chronic and the chronic needing less than the terminal. Some people happen to be further along this spectrum than others. At the end of this presentation, we announced a survey to enumerate and articulate these needs across these various spectrums. It is our hope that this survey helps illustrate these pieces along the timeline, allowing us to focus on perfecting each piece.
This document discusses the goals and responsibilities of Europa Uomo, the European Prostate Cancer Coalition. It aims to give all European men access to innovative and personalized treatment for prostate cancer and improve quality of life for survivors. Europa Uomo works with patients and stakeholders across more than 25 member states to raise awareness of prostate cancer and ensure equitable access to optimal diagnosis and treatment for all European patients.
Healthcare providers and leaders will address three types of silences in healthcare: organizational silence, patient-related silence, and provider to provider silence.
Read More: www.conquersilence.ca
A Singaporean doctor, Choon Chiat Oh, traveled to New York to shadow Dr. John Carucci through the ASDS International Preceptorship Program. Dr. Oh has interests in Mohs micrographic surgery and skin cancers in immunocompromised patients. He observed Dr. Carucci's skin cancer practice and transplant dermatology experiences. Dr. Oh assisted with Mohs surgery cases in the morning and consultations in the afternoon, learning about tissue processing, closures, and more. He found Dr. Carucci to be an excellent mentor and source of inspiration for his patients, colleagues, and students. Dr. Oh called his visit a valuable learning experience.
Central PA 2014 Healthcare Odyssey PanelistsBenjamin Pease
The document outlines the agenda for the 2014 Healthcare Odyssey conference, including panels on CEO issues, para medicine, social media, and long term care. It also discusses a keynote presentation on the Choosing Wisely initiative, which challenges medical specialties to identify unnecessary treatments and tests. The initiative aims to empower patients and encourage evidence-based medicine, though questions remain around its realistic impact. The agenda then lists moderator and panelist names and titles for each session.
This document outlines the mission and initiatives of CURE OM, an organization dedicated to supporting research for ocular melanoma. Their mission is to support research to develop effective treatments and a cure for ocular melanoma through collaborations. They provide various programs for patients including an annual symposium, webinars, support groups and educational materials. CURE OM also funds research through grants and scientific meetings to bring experts together to advance the field. Their goals include continuing to develop a patient registry and expanding education, support and funding for ocular melanoma research.
Global Academic Program of MD Anderson Cancer Centerspa718
The Global Academic Programs (GAP) at MD Anderson Cancer Center supports the institution's mission of eliminating cancer globally through its Sister Institution Network of 33 cancer centers in 24 countries. GAP facilitates collaboration between MD Anderson and its sister institutions across key areas of patient care, research, prevention, and education. Notable activities include referring international patients for second opinions and treatment through the Sister Institution Referral Assistance Center, funding collaborative research projects through the Sister Institution Network Fund, increasing global cancer publications and clinical trials, implementing tobacco control programs, and convening an annual conference to foster networking.
This document summarizes recommendations from a panel discussion on engaging patients in emergency medicine (EM) research. The panel reviewed literature on patient engagement and conducted interviews with EM researchers. They recommend that EM researchers adopt patient engagement to improve research relevance and impact. Specifically, they recommend that the Canadian Association of Emergency Physicians (CAEP) create resources and guidelines to support patient engagement at all stages of research. This includes establishing a national patient council, training materials, and making patient engagement eligible for funding. The panel also provides best practices for the preparatory, execution and translation phases of research that engages patients.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
CORE Group is a collaborative network of NGOs that works to improve community health practices for underserved populations globally. It generates action and learning to strengthen approaches like integrated community case management of diseases. With 50 members in over 180 countries, CORE Group advocates for community-focused primary healthcare and coordinates efforts to advance evidence-based community health interventions at scale.
This document summarizes cancer-related activities at the University of Illinois at Urbana-Champaign from Fall 2013 to Spring 2014. It describes the annual Cancer Community planning meeting in October 2013 where researchers discussed opportunities for grant collaborations. It also discusses working group meetings held in Spring 2014 between Illinois researchers and clinicians from Carle Hospital to explore cancer research opportunities in nutrition, physical activity, and cancer survivorship. The document provides an overview of the Cancer Community's efforts to advance interdisciplinary cancer research through partnerships and planning meetings.
The meeting discussed increasing rates of early-age onset colorectal cancer (EAO CRC) and summarized efforts to address this trend. Major topics included identifying priority risk factors for EAO CRC like diet, antibiotics and obesity during childhood for further study. Participants agreed to explore relationships between these factors and the microbiome, and develop prospective cohort studies to examine incidence and adenoma outcomes. Next steps involve continued collaboration to seek funding and publish findings to inform further research.
In the driving seat: Health care and research led for, and by young peopleSimon R. Stones
This seminar was delivered as part of the University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series.
How Participatory Action Research (PAR) informed practice and policy at a Can...Olaf Kraus de Camargo
Presentation at the 77th Annual Meeting of the American Academy of Cerebral Palsy and Developmental Medicine on Sep 13th 2023 in Chicago. Olaf Kraus De Camargo, Alice Soper and Elizabeth Chambers provide an overview of the approach to engage families and patients in research with several projects as examples.
Social media for interactions with patients and colleagues - #AACR15 - April ...Emil Lou, M.D., Ph.D, FACP
These are the slides from my presentation on using Social Media to Interact with Patient and Colleagues. This was presented at the AACR Annual Meeting on Saturday, April 18, 2015 as part of the AACR's Professional Advancement Session on Social Media for Scientists:
http://www.abstractsonline.com/plan/ViewSession.aspx?sKey=0d74c9e9-6886-4794-ab95-224bacc1d4d7&mKey={19573A54-AE8F-4E00-9C23-BD6D62268424}
This document summarizes a presentation about producing health information for children and young people. It discusses trends in children's media usage including increased tablet ownership. It provides an overview of a guide created by the Patient Information Forum for developing high-quality health information for children and young people. The guide was informed by experts in children's health and involved seeking input from children, families, teachers and clinicians. The presentation highlights the importance of testing information with the target audience and providing information in engaging formats like stories and games.
Let's talk people in research sept 2014Simon Denegri
This slide-deck covers the main components of current NIHR approaches towards public involvement in research; its ongoing strategic review of the area and; its current policy towards engaging patients through the NHS.
The document provides an impact report and summary of activities from Brain Tumour Foundation of Canada in 2014. Key points include:
- Over 11,000 connections were made with patients, families, and healthcare professionals to provide support and resources.
- $1.09 million was invested in 17 research projects across Canada to advance the understanding and treatment of brain tumors.
- A formal presence was established in Quebec, and support programs like BrainWAVE expanded to Alberta to serve more patients nationally.
Patient advocacy involves preparing for appointments by requesting medical records, engaging your support system, and taking care of yourself physically and emotionally. Align expectations by asking questions of your care team, and facilitate timely access to quality care by overcoming barriers such as a lack of information or support.
Challenges and Opportunities 07082022 Conference.pptxFredasirwa
The document summarizes a presentation by Prof. Fredrick Chite Asirwa on challenges and opportunities in cancer research reporting in sub-Saharan Africa. It finds that less than 1% of clinical cancer trials are conducted in Africa. Media in Kenya rarely reports on ongoing cancer studies, research findings, or centers conducting cancer research. Challenges include lack of health journalism training, short deadlines, and prioritizing sensational stories over research. Opportunities include partnerships to educate the public and advocate for improved cancer care through research. Recommendations include multidisciplinary collaboration to increase balanced, accurate research reporting across the cancer continuum.
Roger Glass discusses the mission and activities of the Fogarty International Center at NIH. The Center advances global health research by supporting international collaborations, building research capacity abroad, and training scientists. It works across NIH institutes and has over 400 grants supporting areas like chronic diseases, implementation research, and capacity building in low and middle income countries. The Center aims to address global health challenges through strategic partnerships and a focus on research and training.
The document introduces the WECAN Academy, a training program for cancer patient advocates in Europe. It provides background on WECAN (Workgroup of European Cancer Patient Advocacy Networks), which aims to increase collaboration between pan-European cancer patient organizations. The 2019 WECAN Academy saw 105 advocates from 26 countries participate in 24 training sessions across two programs (SmartStart and Masterclass) delivered by 22 speakers and supported by 12 sponsors. It highlights the importance of advocates gaining knowledge across key areas like research, healthcare systems, advocacy skills, and disease information to effectively support patients and influence policy through evidence-based advocacy.
The document summarizes the development of OcuMel UK, a charity that supports patients with ocular melanoma in the UK. It discusses how OcuMel UK was established in 2009, becoming registered as a charity in 2014. It grew its online community and now supports hundreds of patients through information on its website, a helpline, conferences, and by advocating for more research on ocular melanoma. Its priorities include reducing diagnosis delays, improving support for patients and medical professionals, and encouraging research.
Ocumel Canada presented at the Eyes on a Cure Patient & Caregiver Symposium in Raleigh, North Carolina on April 7, 2019. Their presentation discussed the results of a patient survey by the Save Your Skin Foundation to better understand ocular melanoma in Canada, with key goals being to improve patient support, emphasize emotional support, and live their organizational values. They thanked CureOM for their inspiration and support.
Kenny and Sue Colbert share the story of their daughter, Kenan Colbert Koll, and how it led to the initial investigation of ocular melanoma diagnoses in Huntersville, NC.
Uveal melanoma commonly spreads to the liver. This document discusses uveal melanoma (MUM) that has metastasized to the liver. It provides background on MUM, noting that half of patients develop metastases, usually first appearing in the liver. It describes genetic risk factors for metastasis and different risk classifications. The document advocates for locoregional therapies for liver metastases since there are no effective systemic therapies. It presents evidence that liver-directed therapies may prolong survival more than systemic treatments or surveillance alone.
This document provides an overview of targeted therapy approaches for uveal melanoma given by Dr. Marlana Orloff at a patient and caregiver symposium. It defines targeted therapy as drugs that interfere with specific cancer-related molecules and discusses examples of successful targeted therapies in other cancers. For uveal melanoma, the document outlines molecular targets like GNAQ/GNA11 mutations and discusses several targeted drug trials that have shown limited efficacy to date. It also presents emerging areas of interest like compounds targeting the GNAQ/GNA11 mutations directly and epigenetic approaches that could provide indirect targeting of difficult to target genes. In closing, the currently available clinical trials investigating targeted therapies for uveal melanoma are listed
This document summarizes a presentation on uveal melanoma given by Dr. Miguel Materin at a patient symposium. Some key points from the presentation include:
- The Collaborative Ocular Melanoma Study (COMS) showed high diagnostic accuracy for medium and large uveal melanoma tumors and found that for medium tumors, brachytherapy was not worse than enucleation. For large tumors, previous radiation before enucleation provided no benefit.
- Cutaneous and uveal melanoma have different risk factors, presentations, and treatments which are outlined in the NCCN guidelines.
- Dr. Materin discussed ongoing collaborative research including the Collaborative O
Richard Carvajal discusses navigating treatment options for uveal melanoma, focusing on immunotherapeutic strategies. He outlines several systemic treatment approaches including genetic, epigenetic, and immunological targeting. Checkpoint blockade with ipilimumab and nivolumab has shown some efficacy in uveal melanoma but responses are lower than in cutaneous melanoma potentially due to lower tumor mutation burden and PD-L1 expression. Adoptive T cell therapy clinical trials have also shown responses. Ipilimumab and nivolumab are being studied in the adjuvant and metastatic settings. Additional immunotherapies including T cell redirecting therapies targeting gp100 are in clinical trials. Combination strategies may be necessary to improve outcomes for
Overview of radiology basics, scan types and pros and cons of each, presented by David J. Eschelman, MD, FSIR, Professor of Radiology, Sidney Kimmel Medical College of Thomas Jefferson University, Co-Director of Interventional Radiology, Thomas Jefferson University Hospital.
1. Activating mutations in the GNAQ or GNA11 genes occur in approximately 90% of uveal melanoma cases and drive tumor proliferation through downstream signaling pathways.
2. The small GTPase ARF6 is activated by oncogenic GNAQ and plays a key role in orchestrating multiple oncogenic signaling pathways in uveal melanoma cells.
3. Inhibiting ARF6, either through genetic silencing or pharmacological inhibition with the specific ARF6 inhibitor NAV-2729, reduces uveal melanoma cell proliferation in vitro and tumor establishment and growth in vivo, suggesting ARF6 may be a promising molecular target for uveal melanoma treatment.
This document discusses treatment options for metastatic uveal melanoma to the liver. It describes Jefferson's experience treating over 650 patients per year with metastatic uveal melanoma through a multidisciplinary team approach. Key treatments discussed include immunoembolization using GM-CSF, which has shown response rates of 32% and median overall survival of 14.4 months. Yttrium-90 microsphere radioembolization is also discussed as a salvage treatment for patients who have progressed on other therapies, with median overall survival of 10 months. The document emphasizes the importance of locoregional therapies for this disease given the lack of effective systemic therapies.
Presentation by David J. Eschelman, MD, FSIR. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Presentation by Michael Brennan, MD. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Presentation by Chad Kimbler and Carla Tressell. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Presentation by Scott Woodman, MD, PhD. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Promoting Wellbeing - Applied Social Psychology - Psychology SuperNotesPsychoTech Services
A proprietary approach developed by bringing together the best of learning theories from Psychology, design principles from the world of visualization, and pedagogical methods from over a decade of training experience, that enables you to: Learn better, faster!
Integrating Ayurveda into Parkinson’s Management: A Holistic ApproachAyurveda ForAll
Explore the benefits of combining Ayurveda with conventional Parkinson's treatments. Learn how a holistic approach can manage symptoms, enhance well-being, and balance body energies. Discover the steps to safely integrate Ayurvedic practices into your Parkinson’s care plan, including expert guidance on diet, herbal remedies, and lifestyle modifications.
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4. CURE OM
•Founded in 2011
• CURE OM (the Community United for Research and Education
of Ocular Melanoma)
•International patient and family steering
committee
•International scientific steering committee
•Patient education and support
•Scientific meetings and research support
•Secured over $1,500,000 for research
5. CURE OM Mission
•To support research and accelerate the
development of effective treatments and,
ultimately, a cure for ocular melanoma through
innovative strategies including international and
interdisciplinary collaborations. To improve the
lives of people affected by ocular melanoma
by creating systems and programs to provide
education and support. To advocate for the
ocular melanoma community.
6. International Patient & Family Steering
Committee
Fmr Governor Kathleen Blanco
*Sam Buirski
Robert Cheek
*Anne Marie Montijo
Chrisi Santana
Mark Weinzierl
*Kim Roy
Alina Itkis
In memory:
Esther Damaser
7. International Scientific Steering Committee
Co-Chairs
Keith T. Flaherty, MD
J. William Harbour, MD
Members
Laurence Desjardins, MD
Elizabeth A. Grimm, PhD
Hans E. Grossniklaus, MD
F. Stephen Hodi, Jr, MD
Jacob Pe'er, MD
James F. Pingpank, Jr, MD
Dirk Schadendorf, MD
Stefan Seregard, MD, PhD
Carol L. Shields, MD
Michael J. Weber, PhD
David J. Wilson, MD
8. Patient/Caregiver Initiatives
• CURE OM Educational Program:
– Eyes on a Cure: Patient & Caregiver Symposium
•Kimmel Cancer Center, Philadelphia, June 2012.
•MD Anderson, Houston, March 2013
•UCLA, Los Angeles, March 2014
•Kimmel Cancer Center, Philadelphia, March 2015
•Emory University, Atlanta, March 2015
•Washington, DC March 2017
•Denver, CO Spring 2018
•?? Spring 2019
10. – CURE OM Educational Webinar Series
– Educational materials
– Educational and awareness campaigns
– Meet and Greets
– “Buddy” program
– Clinical trials finder
– Support groups in partnership with Thomas Jefferson University
– Grassroots organizing and fundraising
– Galas
9
Patient/Caregiver Initiatives
(Ed Program Cont.)
17. Research Initiatives
• CURE OM has secured over $1.5 million for research
• Uveal Melanoma Specific Peer-Reviewed Research Grants :
– Established Investigator Award ($200,000/2 years):
• Levi Garraway, MD, PhD
• John Sondek, PhD
• William Tansey, MD
• Andrew Aplin, PhD
– Career Development Award ($100,000/2 years):
• Richard Carvajal, MD
• Jae Hyuk Yoo, PhD
• CURE OM scientific meetings
• Patient registry
• TCGA
• Partnerships with NCI, SMR
23. The Cancer Genome Atlas
https://www.cancer.gov/about-
nci/organization/ccg/blog/2017/cure-om
24. Where from here? More to come!
• Continued development of CURE OM Patient Registry
• CURE OM Unite!
• Expand #EyeGetDilated
• Expansion of support groups
• 2018 CURE OM Scientific Meeting
• Development of robust advocacy agenda
• Increased outreach and education
• Increased funding for OM research
• Other? Please help provide feedback and ideas!