Latest news with #NationalMultipleSclerosisSociety
Yahoo
21 hours ago
- Business
- Yahoo
Two patients faced chemo. The one who survived got a test to see if it was safe.
JoEllen Zembruski-Ruple, while in the care of New York City's renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn't realize the drug could kill her. Six days later, Zembruski-Ruple went to Sloan Kettering's urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. 'Enzyme deficiency,' Zembruski-Ruple texted a friend. The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home. Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU. Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it's expensive and must be administered within four days of the first chemotherapy treatment. Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient's genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren't seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco. By the time Zembruski-Ruple's doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal. Khavkine said he 'would have asked for the test' if he had known about it, but added 'nobody told us about the possibility of this deficiency.' Zembruski-Ruple's sister also said she wasn't warned about the fatal risks of the chemo, or told about the test. 'They never said why they didn't test her,' Zembruski said. 'If the test existed, they should have said there is a test. If they said, 'Insurance won't cover it,' I would have said, 'Here's my credit card.' We should have known about it.' Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly. A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it. In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients 'in accordance with NCCN guidelines.' She said the hospital would not discuss a patient's care. On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to 'inform patients prior to treatment' about the risks of taking 5-FU and capecitabine. On March 31 — six days after Zembruski-Ruple's death — the network's expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency. Worried that President Donald Trump's FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine. However, its guidance stated that 'no specific test is recommended at this time,' citing a lack of data to 'inform dose adjustments.' Sloan Kettering 'will consider this guidance in developing personalized treatment plans for each patient,' Nowak told KFF Health News. The new NCCN guidance was 'not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,' said Kerin Milesky, a public health official in Brewster, Massachusetts, who's part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine. European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased. Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn't do deficiency testing, but Alimonti insisted. 'Nope,' she said. 'I'm not starting it until I get the test back.' The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she's had to skip doses because of low white blood cell counts, Alimonti said. She still doesn't know whether her insurer will cover the test. Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers. At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel's co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test 'without saying what to do with the result.' But Richard Pazdur, the FDA's top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. 'If you don't have the information, how do you have counseling?' he asked. Two months later, Venook's panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA's ability to further confront the issue spurred the panel's change of heart, he said. 'I don't know if FDA is going to exist tomorrow,' Venook told KFF Health News. 'They're taking a wrecking ball to common sense, and that's one of the reasons we felt we had to go forward.' On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action. Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine. Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said. A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients. Power Should Rest With Patients Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook's arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said. 'What's better — don't tell the patient about the test, don't test them, potentially kill them in 20 days?' he said. 'Or tell them about the testing while warning that potentially the cancer will kill them in a year?' 'People say oncologists don't know what to do with the information,' said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. 'Well, I'm not a doctor, but I can understand the Mayo Clinic report on it.' The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And 'the vast majority of patients will be able to start treatment without delays,' Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting. Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021. In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements. Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn't been widely studied and isn't included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars. The cancer network panel's changed language is disappointing, he said, though 'better than nothing.' In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. 'JoEllen was beautiful both inside and out,' said Barbara McKeon, a former colleague at the MS Society. 'She was funny, creative, had a great sense of style.' 'JoEllen had this balance of classy and playful misbehavior,' psychotherapist Anastatia Fabris said. 'My beautiful, vibrant, funny, and loving friend JoEllen.' This article was originally published on
NBC News
a day ago
- Business
- NBC News
Two patients faced chemo. The one who survived got a test to see if it was safe.
JoEllen Zembruski-Ruple, while in the care of New York City's renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn't realize the drug could kill her. Six days later, Zembruski-Ruple went to Sloan Kettering's urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. 'Enzyme deficiency,' Zembruski-Ruple texted a friend. The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home. Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU. Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it's expensive and must be administered within four days of the first chemotherapy treatment. Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient's genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren't seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco. By the time Zembruski-Ruple's doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal. Khavkine said he 'would have asked for the test' if he had known about it, but added 'nobody told us about the possibility of this deficiency.' Zembruski-Ruple's sister also said she wasn't warned about the fatal risks of the chemo, or told about the test. 'They never said why they didn't test her,' Zembruski said. 'If the test existed, they should have said there is a test. If they said, 'Insurance won't cover it,' I would have said, 'Here's my credit card.' We should have known about it.' Guidance moves at a glacial pace Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly. A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it. In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients 'in accordance with NCCN guidelines.' She said the hospital would not discuss a patient's care. On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to 'inform patients prior to treatment' about the risks of taking 5-FU and capecitabine. On March 31 — six days after Zembruski-Ruple's death — the network's expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency. Worried that President Donald Trump's FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine. However, its guidance stated that 'no specific test is recommended at this time,' citing a lack of data to 'inform dose adjustments.' Sloan Kettering 'will consider this guidance in developing personalized treatment plans for each patient,' Nowak told KFF Health News. The new NCCN guidance was 'not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,' said Kerin Milesky, a public health official in Brewster, Massachusetts, who's part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine. European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased. A lifesaving ultimatum? Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn't do deficiency testing, but Alimonti insisted. 'Nope,' she said. 'I'm not starting it until I get the test back.' The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she's had to skip doses because of low white blood cell counts, Alimonti said. She still doesn't know whether her insurer will cover the test. Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers. At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel's co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test 'without saying what to do with the result.' But Richard Pazdur, the FDA's top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. 'If you don't have the information, how do you have counseling?' he asked. Two months later, Venook's panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA's ability to further confront the issue spurred the panel's change of heart, he said. 'I don't know if FDA is going to exist tomorrow,' Venook told KFF Health News. 'They're taking a wrecking ball to common sense, and that's one of the reasons we felt we had to go forward.' On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action. Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine. Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said. A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients. Power Should Rest With Patients Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook's arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said. 'What's better — don't tell the patient about the test, don't test them, potentially kill them in 20 days?' he said. 'Or tell them about the testing while warning that potentially the cancer will kill them in a year?' 'People say oncologists don't know what to do with the information,' said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. 'Well, I'm not a doctor, but I can understand the Mayo Clinic report on it.' The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And 'the vast majority of patients will be able to start treatment without delays,' Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting. Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021. In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements. Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn't been widely studied and isn't included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars. The cancer network panel's changed language is disappointing, he said, though 'better than nothing.' In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. 'JoEllen was beautiful both inside and out,' said Barbara McKeon, a former colleague at the MS Society. 'She was funny, creative, had a great sense of style.' 'JoEllen had this balance of classy and playful misbehavior,' psychotherapist Anastatia Fabris said. 'My beautiful, vibrant, funny, and loving friend JoEllen.'
Gulf Today
3 days ago
- Health
- Gulf Today
Erth Zayed Philanthropies donates Dhs25m to NMSS
The National Multiple Sclerosis Society (NMSS) has signed a strategic agreement with Erth Zayed Philanthropies to advance its national multiple sclerosis (MS) agenda. As part of this agreement, Erth Zayed Philanthropies will contribute Dhs25 million to support NMSS in delivering its core priorities, including advancing UAE's first National Coalition for MS, a multi-sector platform to improve care, research, and inclusion across the country. The agreement was signed by Dr. Fatima Al Kaabi, Vice Chair of the National Multiple Sclerosis Society, and a representative from Erth Zayed Philanthropies during a formal ceremony in Abu Dhabi. The announcement of this strategic agreement coincides with World MS Day, marked this year under the global theme 'My MS Diagnosis: Navigating MS Together,' which highlights the importance of early detection and community support. This year, Erth Zayed Philanthropies joins the National Coalition for MS as a founding partner, marking a pivotal step in the UAE's efforts to advance equitable MS care and inclusion. This strategic partnership reinforces the UAE's commitment to enhancing MS care, accelerating research, and advancing equity, catalysing broader multi-sector engagement to shape a more inclusive and transformative national response. Coalition members include Sanofi, Axios International, PureHealth and Manzil Healthcare Services, each playing a vital role in advancing care, awareness, and system-wide impact. Dr. Fatima Al Kaabi said, 'The establishment of the National Coalition for MS is a defining step in our mission to drive equitable access to MS care. This work is inspired by the legacy of our Founding Father, the late Sheikh Zayed bin Sultan Al Nahyan, whose vision was rooted in dignity, inclusion, and access to quality care for all. It is sustained by the leadership of President His Highness Sheikh Mohamed Bin Zayed Al Nahyan, whose commitment continues to shape the future of health and reinforce the UAE's position as a global leader in innovative, people-centered healthcare.' 'On World MS Day, we are proud to join the international community, not only in raising awareness, but in taking meaningful, coordinated action that has the potential to transform outcomes for people living with MS. Today, we are laying the foundations for long-term impact rooted in compassion, powered by collaboration, and guided by a shared responsibility to ensure that every member of our community has the opportunity to live a full and dignified life.' WAM
Zawya
4 days ago
- Business
- Zawya
NMSS and Erth Zayed Philanthropies sign AED 25mln grant agreement to mark World MS Day
Strategic collaboration to drive the UAE's national MS agenda. Abu Dhabi – The National Multiple Sclerosis Society (NMSS) has signed a strategic agreement with Erth Zayed Philanthropies to advance its national multiple sclerosis (MS) agenda. As part of this agreement, Erth Zayed Philanthropies will contribute AED 25 million to support NMSS in delivering its core priorities, including advancing UAE's first National Coalition for MS, a multi-sector platform to improve care, research, and inclusion across the country. The agreement was signed by Her Excellency Dr. Fatima Al Kaabi, Vice Chair of the National Multiple Sclerosis Society, and a representative from Erth Zayed Philanthropies during a formal ceremony in Abu Dhabi. The announcement of this strategic agreement coincides with World MS Day, marked this year under the global theme 'My MS Diagnosis: Navigating MS Together,' which highlights the importance of early detection and community support. This year, Erth Zayed Philanthropies joins the National Coalition for MS as a founding partner, marking a pivotal step in the UAE's efforts to advance equitable MS care and inclusion. This strategic partnership reinforces the UAE's commitment to enhancing MS care, accelerating research, and advancing equity, catalyzing broader multi-sector engagement to shape a more inclusive and transformative national response. Coalition members include Sanofi, Axios International, PureHealth and Manzil Healthcare Services, each playing a vital role in advancing care, awareness, and system-wide impact. Her Excellency Dr. Fatima Al Kaabi, Vice Chair of the National Multiple Sclerosis Society, said: 'The establishment of the National Coalition for MS is a defining step in our mission to drive equitable access to MS care. This work is inspired by the legacy of our late Founding Father, Sheikh Zayed bin Sultan Al Nahyan, whose vision was rooted in dignity, inclusion, and access to quality care for all. It is sustained by the leadership of His Highness Sheikh Mohamed bin Zayed Al Nahyan, whose commitment continues to shape the future of health and reinforce the UAE's position as a global leader in innovative, people-centered healthcare. 'On World MS Day, we are proud to join the international community, not only in raising awareness, but in taking meaningful, coordinated action that has the potential to transform outcomes for people living with MS. Today, we are laying the foundations for long-term impact rooted in compassion, powered by collaboration, and guided by a shared responsibility to ensure that every member of our community has the opportunity to live a full and dignified life.' The grant from Erth Zayed Philanthropies will directly support NMSS in delivering on its key priorities and enabling the National Coalition for MS to address the most pressing challenges faced by people living with MS in the UAE. First announced on World MS Day in 2024, the National Coalition for MS was convened by NMSS to bring together government entities, healthcare providers, insurance and pharmaceutical companies, and educational institutions under a unified national agenda for MS. The Coalition's priorities for 2025-2026 are focused on improving access to patient support resources, promoting inclusive workplace policies, strengthening the skills of healthcare professionals through specialized training, increasing public understanding of MS to enable earlier diagnosis, and ensuring long-term sustainability through coordinated fundraising and investment in research. Together, these priorities form an action-oriented framework designed to mobilize resources, strengthen inclusion across sectors, and ensure that the UAE is a world leader in MS care. As the Coalition moves into its implementation phase, its priorities will continue to be shaped by the voices and experiences of the MS community, ensuring that their needs, priorities, and aspirations drive every step of the journey. Anchored in shared responsibility and measurable impact, the Coalition's members are onboarded to lead or contribute to key initiatives, with defined commitments that span one to two years depending on the scope of work. The Coalition's priorities reflect a commitment to evidence-based solutions. Since its establishment, NMSS has invested AED 6.5 million in MS research, with the next NMSS research grant cycle set to launch on 23 June 2025. As the Coalition transitions into its implementation phase, NMSS continues to call on stakeholders across sectors, from policymakers and healthcare institutions to academic bodies and donors, to join this pivotal movement. About the National Multiple Sclerosis Society Established in 2022 under the Ministry of Community Empowerment, the National Multiple Sclerosis Society (NMSS) is a UAE-based NGO created to better the lives of people living with multiple sclerosis (MS) and their communities in the UAE through education, advocacy and advancing global efforts to finding a cure for MS. NMSS is governed by a board of trustees, advised by a local and international Strategic Advisory Committee and Medical Advisory Committee, and supported by MS ambassadors and volunteers. Together, they ensure that people living with MS have access to high-quality care and get the guidance they need through reliable resources. NMSS works with leading national medical institutions and renowned global partners to build a trusted network of healthcare providers and support organizations. The society aims to raise awareness of MS, create a holistic ecosystem for the MS community in the UAE, and provide support and resources for individuals affected by MS. For more information about MS and the NMSS, please visit Visit the NMSS's official social media platforms for the most recent updates and insights. Instagram: NMSsocietyUAE Facebook: National MS Society UAE LinkedIn: National Multiple Sclerosis Society UAE YouTube: NMSSocietyUAE X: NMSsocietyUAE For media inquiries, please contact: Miral Zalabani Account Director NMSS@ About Erth Zayed Philanthropies Erth Zayed Philanthropies is a network foundation established in November 2024 to coordinate and strengthen the UAE's philanthropic efforts worldwide. Operating from Abu Dhabi under the patronage of His Highness Sheikh Mohamed bin Zayed Al Nahyan, President of the United Arab Emirates, the Foundation is chaired by His Highness Sheikh Theyab bin Mohamed bin Zayed Al Nahyan, Deputy Chairman of the Presidential Court for Development and Fallen Heroes' Affairs and Chairman of the International Humanitarian and Philanthropic Council. Erth Zayed Philanthropies promotes philanthropy as a catalyst, complementing other forms of aid. Its affiliates deliver initiatives across the UAE and in more than 90 countries, focusing on community service, healthcare, education, environmental stewardship, agriculture and food security, and economic empowerment. Through direct programmes, strategic partnerships, and catalytic funds, the Foundation supports long-term, values-led solutions to humanitarian and development challenges.
Zawya
19-05-2025
- Health
- Zawya
National MS Society announces 2025 research grant awardees
Abu Dhabi – The National Multiple Sclerosis Society (NMSS) has awarded AED 4 million in research grants to six UAE-based projects designed to accelerate progress in the understanding, diagnosis, and treatment of multiple sclerosis (MS), marking a major milestone in its second research grant cycle. The projects were selected with input from key stakeholders, including the Department of Health – Abu Dhabi (DOH), highlighting ongoing efforts to build momentum around MS research and advocacy in the UAE. The announcement comes alongside the release of the NMSS 2023–2024 Research Impact Report. This year's funding has doubled compared to the inaugural cycle, reflecting NMSS's strengthened commitment to advancing MS research. This year's grant cycle attracted 46 applications, including submissions developed in collaboration with 15 international and regional partners, representing a nearly fourfold increase compared to the first cycle and demonstrating the UAE's strengthened leadership in MS research. The research grants have been awarded to leading institutions in the country. Funded projects include: Investigating Genetic and Epigenetic Associations with Familial MS, Khalifa University Development and Evaluation of Augmented Reality-Based Dual-Task Training to Enhance Cognitive and Motor Function in People with MS, University of Sharjah Self-Energy Harvesting Sensors for Enhanced Monitoring of MS (SENSE-MS), Khalifa University Assessing Geographic and Socioeconomic Disparities in Access to Disease-Modifying Therapies for MS Patients in the UAE, Mohammed Bin Rashid School Of Government NMSS-LLM: The World's First Large Language Model for MS, Mohamed Bin Zayed University of Artificial Intelligence (MBZUAI) Enhancing Myelination in MS through Targeted Electric Field Stimulation, Khalifa University Her Excellency Dr. Fatima Al Kaabi, Vice Chair of the National Multiple Sclerosis Society, said: 'The success of the second grant cycle reflects NMSS's commitment to championing innovation across the UAE's growing research remarkable growth in both the number and caliber of applications we received this year is a testament to the country's expanding scientific capabilities and its vision to become a global hub for healthcare and research excellence. Developed in collaboration with DoH, the program aligns with national priorities and is driven by the UAE leadership's vision to strengthen the UAE's position as a leader in healthcare innovation. 'Each of these projects represents meaningful progress towards our long-term vision of improving quality of life for people living with MS, both locally and globally, and achieving breakthroughs in MS care. The program is driven by NMSS's commitment to driving transformative research that translates hope into real-world breakthroughs, from earlier diagnosis and improved treatment options to new pathways toward a cure.' Dr. Asma Al Mannaei, The Executive Director of the Health Life Sciences Sector at the Department of Health Abu Dhabi (DoH) stated: 'At the Department of Health – Abu Dhabi, we are deeply committed to advancing the future of MS care through strategic collaboration and shared purpose. Our partnership with the National Multiple Sclerosis Society reflects a unified vision to elevate research, improve patient outcomes, and build a resilient ecosystem for neurological health in the UAE. Together, we aim to drive innovation, shape evidence-based policies, and inspire meaningful progress in the lives of those affected by MS.' NMSS also continues to invest in future talent through initiatives like the joint NMSS MENACTRIMS Fellowship, which offers a postdoctoral research fellowship for young Emirati neuroscientists, supporting their training and development in basic, clinical, or applied MS research. The goal of the program is to foster scientific exchange and grow the pool of skilled researchers dedicated to addressing MS-related challenges in the UAE and beyond. To explore all previously funded research projects and download the NMSS 2023–2024 Research Impact Report, please visit About the National Multiple Sclerosis Society Established in 2022 under the Ministry of Community Empowerment, the National Multiple Sclerosis Society (NMSS) is a UAE-based NGO created to better the lives of people living with multiple sclerosis (MS) and their communities in the UAE through education, advocacy and advancing global efforts to finding a cure for MS. NMSS is governed by a board of trustees, advised by a local and international Strategic Advisory Committee and Medical Advisory Committee, and supported by MS ambassadors and volunteers. Together, they ensure that people living with MS have access to high quality care and get the guidance they need through reliable resources. NMSS works with leading national medical institutions and renowned global partners to build a trusted network of healthcare providers and support organisations. The society aims to raise awareness of MS, create a holistic ecosystem for the MS community in the UAE, and provide support and resources for individuals affected by MS. For more information about MS and the NMSS, please visit Visit the NMSS's official social media platforms for the most recent updates and insights. Instagram: NMSsocietyUAE Facebook: National MS Society UAE LinkedIn: National Multiple Sclerosis Society UAE YouTube: NMSSocietyUAE X: NMSsocietyUAE
