Podcast appearances and mentions of sanford research

In this week's news podcast, leading state democrats and republicans reflect of the 2020 legislative session, Sanford Research joins us for a talk about hydroxychloroquine and the statewide clinical trial, and much more.

Clinical trials are crucial to cancer research and are often standard of care for patients with cancer, but for patients in rural areas, accessing clinical trials poses significant geographic and financial barriers. On this episode, we learn how Sanford Health harnessed its passion and creativity to work around obstacles and ensure its patients have access to cutting-edge cancer treatments.Guest:Lora Black, RN, MPH, OCN, CCRP, Senior Director, Clinical Research, Sanford Research; Clinical Instructor, Sanford School of Medicine at the University of South Dakota; Core Director, Clinical Research Resources and Facilities Core, DaCCoTA CTRRelevant Content:“Her Best Resort,” on the ACCCBuzz blog “A Model Rural Chemotherapy Program,” by Rhonda Roesler, RNC, BSN, MS, et al. “Collaboration: The Key to Creating Value-Based Cancer Care in Rural Communities,” by Matthew R. Sturm, et al. “Policy Issue Brief: Rural Cancer Care,” by the American Society of Clinical Oncology (ASCO) “Health Disparities Affect Millions in Rural US Communities,” by Robin Warshaw, AAMCNews Sanford Health, 2016 ACCC Innovator Award winner “Rural Health: Cancer,” by the Centers for Disease Control and Prevention (CDC)

Rare disease individuals, including those with neuromuscular disorders, are often longing for a treatment, and hopefully one day… a cure. When planning a clinical trial, it is important for researchers to find enough eligible participants that can be contacted quickly. That’s where a patient registry (or database) is critical - there the patients’ clinical and genetic details are collected and made available to researchers. In our first cross podcast (the episode will air on 2 podcast shows), we discuss with Ben Forred CoRDs Cast, a rare disease podcast created by the team at Sanford Research (headquartered in Sioux Falls, SD). On their podcast, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide. Similar to the Congenital Muscle Disease International Registry, Sanford Research also has a rare disease registry, CoRDS, that connects patients and researchers everywhere. Find more information about Sanford Research at: www.sanfordresearch.org/cords Connect with Ben Forred, Director of Clinical Research at Sanford Research, on Twitter at: @SanfordBenF Find Two Rare Mama Bears on Facebook, Instagram & Twitter: @2raremamabears

In this episode, Austin and Alyssa speak with Roberta Smith, the President of the Alagille Syndrome Alliance, and Dr. Kamesh Surendran of Sanford Research. Alagille Syndrome is a devastating rare genetic disorder that affects multiple organ systems. Roberta is both a parent of a child affected by Alagille Syndrome, and a tireless advocate who brings a refreshing perspective on advocacy for rare disorders. Dr. Surendran leads a team of researchers at Sanford who study developmental biology. One of the main projects of his laboratory is investigating the genetics behind Alagille Syndrome, and they seek to learn more about the kidney phenotype of the disorder. There is a ton of information in this installment of CoRDS Cast - enjoy!

Kyle Attended the Professional Patient Advocates in Life Sciences (PPALS) training a few weeks ago.  Immediately following, Sean joined for a screening of The Ataxian to kick off the Great Plains Rare Disease Summit.  Join us for this conversation about patient involvement!

Robin chats with David Pearce, executive vice president of innovation and research at Sanford Health, about the diagnosis and treatment of rare diseases.  Technology is at the forefront in the treatment of rare disease with the advent of gene therapy, Pearce says. There is tremendous interest from Big Phama in rare diseases, Pearce points out, noting the recent purchase of rare disease technological treatments platforms by both Roche and Novartis. Also, Sanford Research now hosts a central registry/database for all rare diseases, called CoRDS (Coordination of Rare Diseases), which can be accessed by clinicians, advocacy groups, and patients. Sanford Research also provides an annual course for patient advocacy groups, which provides instruction and guidance on a variety of issues, including how to talk to providers about rare diseases. It’s difficult for physicians to be experts on more than 7,000 rare diseases, Pearce notes, so education on the diagnosis, for example, in the neurological area, is essential. Two-thirds of rare diseases have a genetic basis, Pearce notes. However, running genetic panels is more sophisticated today than even a few years ago, but issues with reimbursement still remain.  Should there be a Moonshot for Rare Diseases? “I’d love that,” says Pearce.

Todays episode...The amazing Dr. Jill Weimer! Jill Weimer, Ph.D. Associate Scientist and Senior Director of Therapeutic Development   Sanford Research Dr. Jill Weimer is a developmental neuroscientist and oversees the management and continued development of the translational arm of Sanford Research in Sioux Falls, South Dakota. She started at Sanford Research in 2009 as an assistant scientist, and her research program focuses on the molecular mechanisms mediating development of the cerebral cortex and how disruption in these processes can lead to a whole host of neural pediatric disorders, including Batten's disease and Neurofibromatosis Type 1. Dr. Weimer grew up in north central Missouri and moved to upstate New York where she received her bachelor's degree and Ph.D. in neuroscience from the University of Rochester. She completed her postdoctoral training in the Neuroscience Research Center at the University of North Carolina in Chapel Hill with a focus on developmental neuroscience. 

The Patrick Lalley Show on Monday, July 9, 2018. Guests include: Kristi Egland, scientist with Sanford Research on a test for breast cancer reoccurrence and her survivor; The Common Man on Weird Friends on his bug problem. I talk about creating transportation deserts.

Introduction to the CoRDS Registry, Sanford Research, and an interview with the man behind it all, Dr. David Pearce.

The Patrick Lalley Show on Friday, June 22, 2018. The Happy Hour Edition with: Lora Black of Sanford Research on what consumers should know about clinical trials; The Buffalo Maiden is the Weird Friend of the day; Jeff Mann, drummer with Sioux Falls supergroup Habeas Porpoise. I talk about conflict of interest in city government and immigration policy.

The Patrick Lalley Show on Thursday, May 7, 2018. Guests include: The Smart Cyclist Michael Christensen previewing the Sioux Falls Trail Challenge and new single track at Tuthill Park; Liz McMillan, manager of research education programs at Sanford Research, talking about science education and the Sanford Science Festival on June 9. Short Twins game meant lots of conversation about news.

The Patrick Lalley Show on Wednesday, May 9, 2018. Guests include: Dr. Steven Powell of Sanford Research on advancements in treating lung cancer; Scott Hudson on Weird Friends; Blogger Pat Powers of South Dakota War College; Troy Larson of Lewis & Clark Regional Water System. I talk about a victory for the people.

The Patrick Lalley Show on Monday, Feb. 26, 2018. Guests include Dr. Kurt Griffin, lead researcher on the Sanford Project effort to cure Type 1 Diabetes; The Common Man talks Olympic grousing; Matt Dittmanson, director of business development at the Sanford Sports Complex; and Phil Schreck, chief meteorologist at KSFY Severe Weather Center. I talk about legislators showing their true colors.

The Patrick Lalley Show on Thursday, Feb. 22, 2018. Guests include: Ben Forred and Alyssa Mendel of Sanford Research previewing the Great Plains Rare Disease Summit; JeniMc on Weird Friends; Nancy Werhkamp, director of the Osher Lifelong Learning Institute on Lecture Series; Jerry Poleschi of ESPN 99.1 breaking down the coming high school basketball tournaments. I talk about good news from Pierre.

The Patrick Lalley Show on Monday, Feb. 19, 2018. Guests include Dr. Gene Hoyme of Sanford Research on NIH study on the prevalence of Fetal Alcohol Spectrum Disorders; Cory Heidelberger of Dakota Free Press on the South Dakota Legislature; the Common Man on Fergie and Presidents Day; I talk about Mike Huether's world of secrecy and Donald Trump's silence on Russia.

The Patrick Lalley Show on Monday, Jan. 29, 2018. Guests include Jeff Harkness of ESPN 99.1 on Summit League basketball at the halfway point; Lori Black, director of oncology clinical trials at Sanford Research; The Booneman and the revival of the Brass Holes; The latest Not Real News and a P&L on the assault on teachers in S.D.

Sioux Falls attorney Dan Brendtro and Peter Vitiello of Sanford Research discuss their attempts to raise money to try to find a cure for Friedreich's Ataxia. Brendtro's daughter was diagnosed with FA when she was 11. Now 16 and in high school, his daughter is in a wheel chair and faces the possibility of dying in her 20s.

The Patrick Lalley Show on Nov. 29, 2017. Guests include Dr. Curt Griffin of Sanford Research on diabetes in society, Scott Hudson on Lydia Loveless documentary, Dorothy Booraem director of independent film "Corruptor," and Sam Trebilcock, transportation planner for Sioux Falls on League of American Bicyclists designations of bicycle friendly cities.

Dr. David Pearce discusses the goals and work of Sanford Research in Sioux Falls on The Patrick Lalley Show, Oct. 17, 2017.

Dr. David Pearce discusses the goals and work of Sanford Research in Sioux Falls on The Patrick Lalley Show, Oct. 17, 2017.

Dr. David Pearce discusses the goals and work of Sanford Research in Sioux Falls on The Patrick Lalley Show, Oct. 17, 2017.

Part 2 of a 3 part series on the ethics of genetic testing. Elizabeth McMillan of Sanford Research discusses the partnership with Harvard Medical School to bring conversation to high schools. Patrick Lalley Show, Aug. 23, 2017.

Part 2 of a 3 part series on the ethics of genetic testing. Elizabeth McMillan of Sanford Research discusses the partnership with Harvard Medical School to bring conversation to high schools. Patrick Lalley Show, Aug. 23, 2017.

David Pearce created the Coordination of Rare Diseases at Sanford or CoRDS registry as a national resource that could help accelerate research into rare diseases. We spoke to Pearce, president of Sanford Research, director of Sanford Children’s Health Research Center, and the Global Genes 2012 Champions of Hope honoree for Research & Science, about his own research into the neurodegenerative disorder Batten Disease, how that led to the development of CoRDS, and the role patient registries can play in accelerating rare disease research and the development of new therapies. This is an encore presentation of an interview with Pearce that originally aired April 2015.

David Pearce created the Coordination of Rare Diseases at Sanford or CoRDS registry as a national resource that could help accelerate research into rare diseases. We spoke to Pearce, president of Sanford Research, director of Sanford Children’s Health Research Center, and the Global Genes 2012 Champions of Hope honoree for Research & Science, about his own research into the neurodegenerative disorder Batten Disease, how that led to the development of CoRDS, and the role patient registries can play in accelerating rare disease research and the development of new therapies.

Today, Dave Jansa, of We Face It Together, talks about how he helps people get through a part of addiction treatment that sometimes tends to be overlooked. There are some people who suffer from addiction who have not necessarily hit their rock bottom. So, although they realize they have a problem, they have often not yet suffered the all big consequences of their addiction. Dave offers coaching, to help these people change their thinking about addiction and to help them change their addictive process before they have to face the deep consequences that are normally associated with addiction. Sixty-four-year-old Dave was born and raised in South Dakota. He comes from a big family where addiction was rife. Currently, five of the eight siblings in Dave's family are abstinent from drugs and alcohol. Dave started drinking alcohol when he was in high school. He also became a heavy marijuana smoker at the time. This curtailed his education because he quit college after his first semester and he went back to work full-time. Dave stopped using marijuana in his early thirties, after many attempts at moderation, and he is currently thirty-two years alcohol-free. During his mid-forties, Dave began to become intensely curious. With the advent of the internet, his curiosity led him to immerse himself in the very confusing landscape of the issues of addiction that he and his brothers had gone through. As a result, he retired early from his very good and long-term sales position and threw himself into the world of addiction. Dave started volunteering for a local community organization, which eventually became a very innovative organization that was doing things differently and breaking down barriers. He was a great fit for the organization and has been with them ever since then. A big flaw in an already flawed system is that our entire culture, including some people in the addiction-care world, is saying that some people with addictions, whose lives have not collapsed completely, are not yet sick enough for recovery. Seeing his brothers transform before his very eyes made things very logical for Dave. He did not have to wait until everything fell apart to recover. He could also do what his brothers had done, and turn his life around. Dave had no doubt that, although he was low on the spectrum, he was still an alcoholic. At Face It Together, he first went through a protracted trial-and-error process of harm reduction, trying to curtail his drinking. It didn't work, so he decided to go for long-term abstinence. Addiction is known to be a chronic disease. The pillars of chronic disease management are to detect it early and to deal with it as quickly as possible. This makes chronic diseases easier to treat but most people don't think of doing this with addictions. Dave firmly believes that people, who are clearly showing signs of what he refers to as 'pre-addiction', would do well to have a non-judgmental conversation with a health practitioner in a clinical environment. At Face It Together, they offer non-judgmental peer coaching. They never tell people what to do. They rather make suggestions. They often initially assist people towards a harm-reduction protocol, which is on the way to recognizing and dealing fully with their problems of addiction. Sometimes people with addictions simply need to recognize that it's normal to first want to cut back on using, before going for complete abstinence. At Face It Together, they knew that peer conversations were powerful. They employed science and embraced harm reduction and motivational interviewing. They also expanded on this and developed a tool called Recovery Capital Index, with which they can accurately measure someone's addiction wellness. This tool has been validated as an instrument, by Sanford Research, in South Dakota. This has been published in the South Dakota Journal of Medicine. Addiction wellness is measured way more in terms of how an individual is fitting into the world, and less in terms of how much drug they are using. At Face It Together, they work hard on people's behaviors and they have conversations with people about their journey. The Recovery Capital Index shows them where people are doing well and where they are not doing well. Today, Dave feels exponentially better than he did during the sixteen years that he was quitting alcohol. *Links:* We Face It Together's website - www.wefaceittogether.org ( http://www.wefaceittogether.org/ )