Zahydie Burgos Ribot and her husband, Francisco Rios, are checking items off their travel bucket list and spending quality time together before Francisco will no longer be able to travel \u2013 and before his brain forgets. <\/p>\n
The Florida-based couple recently crossed Alaska off the list. Their next trip will be to Niagara Falls. <\/p>\n
\u201cWe have a whole schedule,\u201d Ribot said. \u201cWe\u2019re choosing to live every single day with a lot of intention.\u201d <\/p>\n
That\u2019s because they know that Rios\u2019 window to easily create new memories is closing. About three years ago, at age 46, he was diagnosed with early-onset <\/strong>Alzheimer\u2019s disease. <\/p>\n Although Rios has been doing well on a new treatment he receives through a clinical trial, Ribot is increasingly afraid that the study could be hindered by cuts to federal funding of biomedical research. <\/p>\n The Trump administration has been conducting a restructuring of the US Department of Health and Human Services as well as a review of funding, resulting in the abrupt cancellation of hundreds of research grants under the National Institutes of Health and many others left in limbo, waiting for a decision on whether their funding will be renewed. <\/p>\n In March, 14 of 35 Alzheimer\u2019s Disease Research Centers had their funding halted by the NIH as the administration stopped $65 million in funding for research, according to Democratic lawmakers. <\/p>\n \u201cNIH paused funding for 14 research grants across several universities. It is important to note that this action was not a reflection of the quality or significance of the research, including the critical work being done in Alzheimer\u2019s disease,\u201d HHS spokesperson Andrew Nixon said in an email Thursday. \u201cInstead, the pause was a necessary step in response to compliance issues related to grant proposals that included language pertaining to DEI, as well as concerns regarding antisemitism.\u201d <\/p>\n Nixon said that the NIH is \u201ccommitted to advancing groundbreaking research in Alzheimer\u2019s disease. However, we also have a responsibility to ensure that all grant proposals align with the established policies, including ensuring that language used in these proposals reflects NIH\u2019s commitment to non-discriminatory, merit-based research practices,\u201d he said. \u201cThe responsibility for removing any non-compliant language lies with the institutions, and we encourage them to make necessary changes so these important Alzheimer\u2019s studies will resume.\u201d <\/p>\n Ribot called the funding pauses alarming. <\/p>\n \u201cThis is alarming, because these are critical data that inform not only prognosis but inform trajectory of the disease and inform future treatments,\u201d Ribot said. <\/p>\n Rios also has been following these developments and remains worried about his future. <\/p>\n \u201cHe just asked me, \u2018Am I going to continue getting the trial?\u2019 But he was crying and literally ripping the skin off his fingers because of the anxiety,\u201d Ribot said. \u201cHe knows what\u2019s at stake. He is aware. He wants to continue the medication.\u201d <\/p>\n Rios has been participating in a clinical trial conducted by Washington University in St. Louis in which he has been receiving the Alzheimer\u2019s drug Leqembi paired with an experimental therapy called E2814, given as intravenous infusions, to help slow his Alzheimer\u2019s symptoms. <\/p>\n Ribot credits the trial with helping curb Rios\u2019 memory loss and cognitive decline. <\/p>\n Before Rios was diagnosed, he began to emotionally withdraw and disconnect from loved ones. He even got lost while driving to a routine doctor\u2019s appointment about 10 minutes from their home, Ribot said. <\/strong> <\/p>\n She initially thought he was showing signs of depression. But Rios\u2019 doctor realized that something else was happening in his brain and referred him to the Young-Onset Dementias Clinic at Johns Hopkins in Baltimore. <\/p>\n \u201cThey ran more tests, and they ran the genetic testing, and that\u2019s when we had the final confirmation that it was Alzheimer\u2019s,\u201d Ribot said. <\/p>\n If funding for Rios\u2019 clinical trial is curtailed, she said, not only could he and the other participants lose access to the medications that they hope are giving them <\/strong>more time to live normally, the development of other impactful Alzheimer\u2019s treatments could be delayed. <\/p>\n About a dozen Alzheimer\u2019s disease research centers are still waiting for their federal funding to be renewed, said Dr. Michael Greicius, professor of neurology and neurological sciences at the Stanford University School of Medicine, whose Alzheimer\u2019s center is among those awaiting a decision. <\/p>\n \u201cOur five-year renewal was reviewed in October. Normally, we would have gotten a decision probably around February,\u201d he said, adding that research funding for his team at the Stanford Alzheimer\u2019s Disease Research Center ran out about three weeks ago. <\/p>\n \u201cIt seems like we\u2019re moving towards renewal, but it\u2019s very hard to read the tea leaves, and that makes it really challenging when you\u2019re thinking about projects you\u2019d like to undertake or hiring new research coordinators, for example,\u201d he said. <\/p>\n Greicius and his colleagues had to <\/strong>hold off on <\/strong>starting research projects because they didn\u2019t know whether there will be funding coming in, he said. <\/p>\n The uncertainty around funding baffles him. <\/p>\n \u201cIt\u2019s hard to imagine a less political topic than Alzheimer\u2019s disease. I mean, it affects people from red states and blue states and purple states. It\u2019s so common. Almost everyone either has a relative in their family or at least has a friend who has a relative that\u2019s been affected by Alzheimer\u2019s disease,\u201d Greicius said. <\/p>\n \u201cIt still seems like the easiest-to-agree-upon target for federally funded research, and yet it\u2019s not at all clear that this progress is going to continue,\u201d he said. \u201cThat, for me, is a large part of the frustration \u2013 just the uncertainty of it all.\u201d <\/p>\n Preventive neurologist Dr. Richard Isaacson, founder of one of the first Alzheimer\u2019s prevention clinics in the United States, is also waiting to see whether his federal grants will be renewed. <\/p>\n \u201cWe\u2019re somewhere between limbo and purgatory,\u201d he said. <\/p>\n Isaacson, who directs research at the Institute for Neurodegenerative Diseases in Florida, has developed free online software called RetainYourBrain, which aims to democratize access to brain health care. Users input <\/strong>their risk factors for Alzheimer\u2019s and receive a personalized risk assessment, as well as personalized recommendations and time-sensitive reminders on how to improve their brain health. <\/p>\n But without continued funding, \u201cit may never be released to the public,\u201d Isaacson said. <\/p>\n Supporters of the funding cuts argue that the nation should reduce \u201cwasteful spending\u201d and prioritize efficiency. <\/p>\n \u201cWith the government wanting to cut back on spending money, I get it. But Alzheimer\u2019s is one of the most expensive diseases to our health care system,\u201d Isaacson said. <\/p>\n It\u2019s estimated that nearly 1 in every 6 Medicare dollars was spent on someone with the disease last year, according to the Alzheimer\u2019s Association, and the average per-person Medicare spending for older adults with Alzheimer\u2019s is estimated to be 2.8 times higher than average per-person spending for all other seniors. <\/p>\n \u201cI feel that cutting Alzheimer\u2019s research that may save money over time, and doing it rapidly, is a bad investment,\u201d Isaacson said. <\/p>\n While some studies are waiting to see if they\u2019ll continue, some studies have already had to take steps to shut down. <\/p>\n When the NIH canceled grants <\/strong>in March <\/strong>related to diversity, equity and inclusion, or DEI, some Alzheimer\u2019s studies were swept up in the consequences. <\/p>\n Federal funding for a multiyear study at the University of California, Davis\u2019 Alzheimer\u2019s Disease Research Center was abruptly terminated. This led the center\u2019s co-director, Dr. Charles DeCarli, to issue an appeal and fight to have the grant fully reinstated. <\/p>\n \u201cThe appeal had to be done within 30 days, and in the meantime, we had to shut down the study. So while I was working on the appeal, my team was doing all the things that closing a study needs to involve, which is hundreds of hours of work, notifying the 33 sites in this study,\u201d he said. <\/p>\n DeCarli\u2019s appeal was successful. He won that battle but is still recovering from the turmoil. <\/p>\n \u201cIt was a very challenging month in my life,\u201d DeCarli said. \u201cIt just seems to me that the only reason that this was terminated is because it includes the word \u2018diverse\u2019 in the title.\u201d <\/p>\n The study, titled \u201cThe Clinical Significance of Incidental White Matter Lesions on MRI Amongst a Diverse Population with Cognitive Complaints (INDEED),\u201d involves examining the effect that white matter injury in the brain and vascular issues may have on cognitive performance as well as health outcomes. The research was being funded by the NIH\u2019s National Institute of Neurological Disorders and Stroke. <\/p>\n Up to 25% of people who develop dementia later in life may have some type of vascular contributing factor to their disease, and DeCarli said his study could help \u201clay out the foundation\u201d for diagnostic tests and treatments for them. <\/p>\n \u201cWhen these studies are terminated, an opportunity is lost to advance science,\u201d he said. <\/strong> <\/p>\n Other studies may face similar threats to funding. According to a policy notice issued Monday, the NIH said it will begin pulling medical research funding from universities with diversity and inclusion programs and any boycotts of Israeli companies. <\/p>\n The agency \u201creserves the right to terminate financial assistance awards and recover all funds\u201d if grant recipients do not comply with federal guidelines barring diversity and equity research and \u201cprohibited boycotts,\u201d the notice said. <\/p>\n The policy applies to \u201cdomestic recipients of new, renewal, supplement, or continuation awards that are issued on or after\u201d April 21, according to the notice. <\/p>\n Separately, the Washington-based nonprofit UsAgainstAlzheimer\u2019s has been tracking previously terminated grants and the funding cuts at the NIH that took place in March and earlier this month, and it warns that some cuts could stall the progress being made to find a cure for Alzheimer\u2019s disease. <\/p>\n \u201cIn the last 10 years, there have been groundbreaking advances in Alzheimer\u2019s disease research, in understanding where the disease comes from, and understanding how to diagnose the disease, and ultimately in how to treat the disease. But we don\u2019t have a cure yet,\u201d said Russ Paulsen, chief operating officer at UsAgainstAlzheimer\u2019s. <\/p>\n \u201cIn looking through the list of grants that have been affected, it appears to cut across prevention, diagnosis, treatment and ultimately seeking a cure, as well as understanding the basics of the disease to start with,\u201d he said. \u201cWe\u2019ve made huge progress, and now is not the time to take our foot off the accelerator.\u201d <\/p>\n In the meantime, Ribot and Rios are trying to keep their heads up. They are keeping an eye on any new developments in research funding cuts while continuing to focus on their travel bucket list. <\/p>\n \u201cWhile he\u2019s here and we\u2019re here, we\u2019re living our life. We are finding joy. Even when we cry, we laugh. Even when we are in despair, we have hope,\u201d Ribot said. <\/p>\n \u201cI\u2019m not going to romanticize this disease, because that\u2019s not it \u2013 but there\u2019s still purpose and meaning and joy,\u201d she said. \u201cWe\u2019re not going to let this disease rob us of our present.\u201d <\/p>\n<\/p>\n Zahydie Burgos Ribot and her husband, Francisco Rios, are checking items off their travel bucket list and spending quality time together before Francisco will no longer be able to travel \u2013 and before his brain forgets. The Florida-based couple recently crossed Alaska off the list. Their next trip will be to Niagara Falls. \u201cWe have …<\/p>\n","protected":false},"author":1,"featured_media":2240,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"loftocean_post_primary_category":0,"loftocean_post_format_gallery":"","loftocean_post_format_gallery_ids":"","loftocean_post_format_gallery_urls":"","loftocean_post_format_video_id":0,"loftocean_post_format_video_url":"","loftocean_post_format_video_type":"","loftocean_post_format_video":"","loftocean_post_format_audio_type":"","loftocean_post_format_audio_url":"","loftocean_post_format_audio_id":0,"loftocean_post_format_audio":"","loftocean-featured-post":"","loftocean-like-count":0,"loftocean-view-count":484,"tinysalt_single_post_intro_label":"","tinysalt_single_post_intro_description":"","tinysalt_hide_post_featured_image":"","tinysalt_post_featured_media_position":"","tinysalt_single_site_header_source":"","tinysalt_single_custom_site_header":"0","tinysalt_single_custom_sticky_site_header":"0","tinysalt_single_custom_sticky_site_header_style":"sticky-scroll-up","tinysalt_single_site_footer_source":"","tinysalt_single_custom_site_footer":"0","footnotes":""},"categories":[35],"tags":[],"class_list":["post-2239","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-news"],"_links":{"self":[{"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/posts\/2239","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/comments?post=2239"}],"version-history":[{"count":0,"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/posts\/2239\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/media\/2240"}],"wp:attachment":[{"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/media?parent=2239"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/categories?post=2239"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/retirednurseblog.com\/index.php\/wp-json\/wp\/v2\/tags?post=2239"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}} An experimental treatment<\/h2>\n
\u2018It\u2019s hard to imagine a less political topic\u2019<\/h2>\n
\u2018An opportunity is lost to advance science\u2019<\/h2>\n