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Best Kevin And Luisa podcasts we could find (updated February 2020)
Best Kevin And Luisa podcasts we could find
Updated February 2020
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Face the climate crisis head on, but understand that we have the power to solve this. From former UN Chief Christiana Figueres and the team who brought you the Paris Agreement, this podcast about issues and politics will inform you, inspire you and help you realize that this is the most exciting time in history to be alive.
 
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show series
 
This week we're LIVE for a #TheFutureWeChoose conversation with NYT columnist and 3 time Pulitzer Prize winner, Tom Friedman. The book is out! You can officially order it now wherever books are sold! Here's the link to order your copy now: https://globaloptimism.com/the-future-we-choose-book/ This episode was recorded at Politics and Prose, a fanta…
 
Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook.SMA News Today’s multimedia associate, Price Wooldridge, discusses the discovery of a potential new SMA genetic modifier.Are you interested in learning more ab…
 
The most consequential event this year in climate is the 2020 U.S. Election. Former U.S. Secretary of State John Kerry gets real with us on why some people should be held criminally liable for not acting on climate science, why he's optimistic about the future, and how climate as a voting issue can beat Donald Trump. Pre-order Tom and Christiana's …
 
Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums.Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF protein profile may help predict Spinraza responses in late-onset SMA patients.Are you interested in learning more about spinal muscular atrophy? If so, please visit h…
 
Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columnists! In her latest column, Peering Through the Fog of Fear, she explains why she took a break from writing about SMA and how she came to the decision to …
 
In episode 52, host Kevin Schaefer talks with Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event R…
 
Finding the balance between living cautiously and fearfully can be challenging. Forums moderator DeAnn Runge shares how she navigates that delicate balance.Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how magnetic rods may be an alternative treatment to correct scoliosis in children with SMA.Are you interested in learnin…
 
This week we deviate from the normal episode with 3 of our friends! First, we meet up with Rainn Wilson (Dwight Schrute / The Office U.S.) and Dr. Gail Whiteman to talk about @ArcticBasecamp's new campaign, "Speak Science To Power" and how we can give power to scientists and bring science into corporate boardrooms everywhere. Later on David Perry (…
 
SMA News Today’s multimedia associate, Price Wooldridge, discusses an early access program from Roche for SMA therapy Risdiplam in Europe and forums Director Kevin Schaefer talks about forming friendships with his caregivers, and why he thinks this is important. Are you interested in learning more about spinal muscular atrophy? If so, please visit …
 
Some recent topics being discussed on the forums include accessible travel and becoming friends with your caregivers. Also, Dose of DeAnn has a new episode where she collaborates with a community member to talk about the importance of exercise, and forums Director Kevin Schaefer talks about his time working for his college student newspaper.Are you…
 
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new treatment algorithm for SMA infants diagnosed via vital newborn screening. Also, for those with mobility issues one of the most difficult aspects of life can be going to the bathroom. Options to make it easier do exist. A couple options that can be discussed with a doctor are …
 
This week a special guest drops in to chat with the gang! Hint: He's a "High Level Climate Action Champion" (what a title!) They talk what is crucial to the lead up to COP 26 and why ambition is the heart of driving results this year on climate. Later on we're joined by Oliver Bäte, CEO of Allianz. Oliver is boldly charging the insurance industry t…
 
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the ZPR1 protein may be a new potential therapeutic target for SMA. Also, Forums Director Kevin Schaefer talks about an NBC pilot, in which one of the main characters is a kid with SMA.Are you interested in learning more about spinal muscular atrophy? If so, please visit https:/…
 
Forums Director Kevin Schaefer talks about embracing the power of his voice in his latest column. Also, every family goes through their share of triumphs and tribulations. In Michael Casten’s latest column he reflects on their most recent struggles as a family.Are you interested in learning more about spinal muscular atrophy? If so, please visit sm…
 
In episode 51, I talked with Ryan Manriquez and Nora Zade from Sacramento, California. Ryan is a college student with SMA Type 2, and he and Nora have been dating for several months. Both are sophomores at Folsom Lake College, and they’ll be transferring to UC Davis this fall. Throughout this conversation, they talk about their relationship, colleg…
 
SMA News Today’s multimedia associate, Price Wooldridge, discusses how up to 100 free Zolgensma treatments are going to go out worldwide in 2020 under an access program. Also, one thing DeAnn Runge struggles with is finding the line between determination and a waste of time. After spending half an hour trying to unplug her iPad, she decided she has…
 
At just 23 years of age, Luisa Neubauer is fighting for our future in ways that will shape the future of activism and corporate responsibility forever. A best selling author and #FridaysFor Future activist, Luisa got the attention of the CEO of Siemens over an investment they have in the infamous Adani coal mine in Australia. After Siemens then off…
 
We discuss a study that finds adults with SMA, tend to report low prevalence of non-motor symptoms & Forums Director Kevin Schaefer reads from a Monday Motivation post in the SMA News Today Forums.Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com…
 
Forums Director Kevin Schaefer talks about trying to manage stomachissues as an individual with SMA & as usual there are great conversations going on in the SMA News Today forums, says DeAnn Runge. Discussions range from how you communicate to strangers your vulnerability to germs to talking about subscription boxes breaking up the monotony of wint…
 
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if t…
 
We discuss the HHS Secretary, Alex Azar, touts the White House efforts to cure rare diseases & Forums Director Kevin Schaefer talks about taking advantage of new opportunities when you have SMA.Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.comBy SMA News Today
 
It's 2020! We're back! It's the "super year" for climate and the most consequential decade in human history! This week Tom and Christiana talk with former Prime Minister of Australia, Kevin Rudd. Kevin shows us the roots of why the Conservative Party in Australia and the Murdoch media empire are perpetuating a state of climate inaction, and why he'…
 
Go to our forums: http://bit.ly/forumsflashbriefingsForums Director Kevin Schaefer recounts the story of his adventures inPhiladelphia, and talks about what it means to be rare and resilient. Also, on the SMA News Today forums there’s new content posted on a daily basis and virtually no topic is off limits. Recently SPC’s and other options to make …
 
In episode 50, hosts Kevin Schaefer and Michael Morale discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regarding its potential cost, and what kind of impact it will have on the SMA community. They also talk about two of their recent columns from the main site. Th…
 
We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. DeAnn talks about the reality of aging parents and how it’s made her become self-reliant as…
 
We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnistMichael Casten.Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com…
 
Forums Director Kevin Schaefer talks about the importance of mediarepresentation for people with disabilities, and calls for more of it in 2020. Also, great conversations are going on in the forums. Alyssa is adjusting to her new wheelchair. DeAnn is dealing with a caregiver who is under the weather. Other topics include managing caregivers, when k…
 
We discuss how targeted genetic screening may be useful in diagnosing patients with SMA-like symptoms. Also, a harmless prank can be fun, but it’s not always easy when you have SMA. With the help of her niece DeAnn pulled a prank on her Mom.Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com…
 
We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column.Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com…
 
In her most recent column, I Don’t Need to Win to Be a Winner: Volunteering Is Its Own Reward, Halsey explains how her volunteer efforts have been recognized. Halsey not only works with a great group of people at Turnstone, they acknowledge and support the work she does. Also, Forums Director Kevin Schaefer talks about how having SMA has led to som…
 
We discuss how Asuragen is stating that a new screening kit, quickly and thoroughly analyzes SMN1 and SMN2 genes in the lab. & With all the variables that can come into play getting her Spinraza injection, DeAnn never feels totally at ease. She’s grateful for the opportunity and shares her journey to dose 10.Are you interested in learning more abou…
 
We discuss how interim phase 2/3 data shows that risdiplam improves motor function in people with SMA types 2 and 3 & setting new year’s resolutions when you have SMA by Forums Director Kevin Schaefer.If you would like more information regarding SMA, please go to www.smanewstoday.comBy SMA News Today
 
Tom and Christiana interview producer Richard Curtis. Richard is the creator of Bridget Jones Diary, Four Weddings and a Funeral, and Love Actually - but Richard's social work with Comic Relief, Make Poverty History, and the 10:10 campaign are equally as inspiring. Tom, Christiana, and Paul wish listeners a Happy Holidays and talk about the excitin…
 
We discuss how AveXis is unaware of the cause of inflammation, that led to the STRONG trial hold of AVXS-101. Forums Director Kevin Schaefer shares some of his highlights from this year.Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family st…
 
Forums Director Kevin Schaefer recounts the story of acquiring his JACO robotic arm in his latest column & DeAnn Runge talks about Kala Godin's latest column, Pondering the Possibilities of the Future, where she writes about anticipating treatments that are on the horizon. DeAnn Runge can relate to this because she had some of the same feelings whi…
 
In episode 48, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy risdiplam. We also talk with our very own DeAnn Runge. DeAnn discusses the origins of her YouTube series “Dose of DeAnn.” She also explains why she shares her story of living with SMA with others.…
 
We discuss the FDA granting priority review for risdiplam, which is a potential oral therapy for all SMA types. & How do you guys manage to do fun things that require a bit of travel? After hearing her favorite band will be touring nearby, forums moderator DeAnn Runge is trying to devise a plan to go. Unfortunately it doesn’t look like it will work…
 
We discuss how BillionToOne announced that prenatal blood test for SMA are now available in 4 countries in Europe and Forums Director Kevin Schaefer talks about being proactive and maintaining an independent lifestyle with SMA.Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how t…
 
Forums Director Kevin Schaefer reflects on his love for movies, andespecially the films that taught him lessons about living with SMA. Also, on the forums, www.smanewstoday.com/forums, there’s a specific category just for YouTube videos. All of the latest videos can be found from the Morale Monologue, Ryan’s Robotics and Dose of DeAnn. Here is a br…
 
We discuss how researchers are stating how exercise can help increase functional SMN protein, and can supplement SMA treatments.Being sick more holidays than being healthy have nurtured some rather unconventional traditions for DeAnn. Despite this being the most worrisome time of the year it can also be the best. There’s nothing like expressing lov…
 
This week we have an inspiring conversation with Wanjira Mathai as she talks about The Green Belt Movement, the interconnection of sustainability, and how to combat corruption & greed. We discuss the announcement by the European Investment Bank to stop funding fossil fuels, how psychology professionals plan to work on climate change, and Paul takes…
 
We discuss a study that suggests how MRI fiber tracking may be a potential biomarker of SMA course and response to therapy. Forums Director Kevin Schaefer shares his thoughts on the experimental therapy risdiplam. If FDA-approved, this drug would be the first oral treatment for SMA.Are you interested in learning more about the latest treatment for …
 
Forums Director Kevin Schaefer reflects on the past decade in his latestcolumn. Although the forum moderators took a short break from posting over the Thanksgiving holiday, there are several great conversations going on: Risdiplam getting fast tracked for approval raises questions in the community and Giving Tuesday is a topic of interest as well a…
 
In episode 47, host Kevin Schaefer talks with James Ian from Los Angeles, California. James is a singer, songwriter, and actor, and he has SMA Type 3. Kevin and James talk about music, living with SMA, and media representation of people with disabilities. Photo cred: Travis Tanner PhotographyJames Ian on Spotify: https://open.spotify.com/artist/0Kp…
 
We discuss how a study of MRI scans of facial nerves, can help diagnose spinal and bulbar muscular atrophy & Along with being a friend, pets teach responsibility. As long as they get TLC, they don’t seem to careabout disabilities. If you or your child has a pet on their Christmas wish-list, it might be worth considering.Are you interested in learni…
 
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