Podcast terbaik Atax (2024)

1
Maximize your Doctor Visits 13:00

4y ago13:00

13:00

Maximize your Doctor VisitsStrategies to include before your next doctor visit to maximize your appointment time. An average appointment is 30 - 60 minutes. That’s not a lot of time. In this session you will learn strategies to make the most out of those minutes. #kNOwATAXIA #AtaxiaiTunes: podcast/k...https://itunes.apple.com/us/ Simple Podcast htt…

1
Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise 4:53

4+ y ago4:53

4:53

#ThoughtfulTuesday Exercise , Take a step, Stay tune to the end!Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise#kNOwATAXIA MGH NeurologyOleh Dr. Jeremy Schmahmann, Dana Mauro

1
Dr Jeremy Schmahmann Ataxia patients prevent infection COVID-19 1:05:09

4+ y ago1:05:09

1:05:09

Dr Jeremy Schmahmann.. is head of the Ataxia Unit at Massachusetts General Hospital in Boston, Massachusetts MINDlink FoundationAtaxia patients: steps to take care of yourself to prevent infection COVID-19 https://youtu.be/c-ic6Wn9m0QOleh Dana Mauro

1
Be a part of the Joint Mission Bataan 18:25

4+ y ago18:25

18:25

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Mike De Rosa and Mark Minkin

1
SCAR Scale 24:15

4+ y ago24:15

24:15

Oleh Dana Mauro

1
Feeling alone in your Ataxia diagnosis – finding the right support system is key. 6:18

5y ago6:18

6:18

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
Making the most out of the first appointment with your neurologist. 6:21

5y ago6:21

6:21

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
Ataxia neurologists how to prepare 5:01

5y ago5:01

5:01

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Ataxia, kNOwATAXIA, Dana Mauro, MGH

1
Spinocerebellar #Ataxia? Biohaven is sponsoring a clinical trial 10:12

5y ago10:12

10:12

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Ataxia, Did You Know, kNOwATAXIA, Dana Mauro

1
How is Ataxia is diagnosed 3:23

5y ago3:23

3:23

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
What is Friedreich Ataxia 2:42

5y ago2:42

2:42

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
Today’s topic is Doctor Visits 2:00

5y ago2:00

2:00

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
What is Hereditary Ataxias? #kNOwATAXIA 1:49

5y ago1:49

1:49

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
What is a clinical trial 2:35

5y ago2:35

2:35

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
What is Episodic Ataxia 3:00

5y ago3:00

3:00

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
What are you eating? 4:48

5y ago4:48

4:48

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
Patient Registries are essential tools for Ataxia 2:12

5y ago2:12

2:12

iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
Caregivers, Independence is something we all want 5:35

5y ago5:35

5:35

AtaxiaFacts@gmail.com iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsOleh Dana Mauro

1
What is Community fundraising 2:46

5y ago2:46

2:46

Thousands of families, friends, co-workers, neighbors, and communities come together each year to support NAF’s fight to improve the lives of people affected by Ataxia and their families.National Ataxia FoundationOleh Dana Mauro

1
Ataxia Awareness Day Senate Resolution 2:09

5y ago2:09

2:09

I would just like to thank everyone involved in advocating for the National Ataxia Awareness Day Senate Resolution. We can accomplish big things when we are united. #kNOwATAXIANational Ataxia Foundation #Ataxia MINDlink FoundationOleh Ataxia, kNOwATAXIA, Dana Mauro

1
The Cerebellum neurologists call 'the little brain'. 1:44

5y ago1:44

1:44

Hi #kNOwATAXIA Nation! Ever wonder what's impacting your ability to walk a straight line? Listen in to learn about the trouble maker most neurologists call 'the little brain'.Oleh Dana Mauro

1
Exercising, What are you waiting for 2:56

5y ago2:56

2:56

Exercise can be effective in the treatment and management of a number of chronic health conditions. iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website www.rideforjohn.org/adidyou... Instagram https://www.instagram.com/ataxian_/ Twitter https://t…

1
National Ataxia Foundation established in 1957 2:26

5y ago2:26

2:26

NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families. #kNOwATAXIA #IAAD2019 National Ataxia Foundation Email your photo to AtaxiaFacts@gmail.comOleh Dana Mauro

1
Massachusetts General Hospital (MGH) Ataxia Unit 2:23

5y ago2:23

2:23

The Massachusetts General Hospital (MGH) Ataxia Unit was the first and is now the most active such clinic in the US, providing comprehensive care to patients across the age spectrum who have disorders of cerebellum and related conditions.Oleh Dana Mauro

1
3 Faces Of Ataxia 2:30

5y ago2:30

2:30

3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware? send in your photo to AtaxiaFacts@msn.comOleh Dana Mauro

1
Cameryn Cobb An inspirational young advocate for Ataxia 8:39

5+ y ago8:39

8:39

I want to introduce you to Cameryn Cobb An inspirational young advocate for Ataxia. Listen in as Cameryn shares her story and what she is doing to make a difference. MINDlink Foundation Rhode Island Ataxia Support GroupNational Ataxia Foundation Biogen #kNOwATAXIA #Ataxia #2019AAC iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://s…

1
Lauren Sormani An inspirational young advocate for Ataxia a Rare Disease 8:17

5+ y ago8:17

8:17

Hi #kNOwATAXIA Nation. On this #thoughtfultuesday I want to introduce you to Lauren Sormani. An inspirational young advocate for Ataxia. Listen in as Lauren shares her story and what she is doing to make a difference. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.co…

1
Expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. 23:25

5+ y ago23:25

23:25

This Podcast from the annual NAF Meeting in Las Vegas, March, 2019 features Gil L’Italien, PhD, Head of GHEOR and Epidemiology and Melissa Wolfe Beiner, MD, Director of Research and Development and Ataxia Medical Lead, both from Biohaven Pharmaceuticals. They are with us to highlight some important and encouraging new data from an expanded analysis…

1
Andrew Rosen Announced as Executive Director For National Ataxia Foundation 8:23

5+ y ago8:23

8:23

Andrew Rosen Announced as Executive Director #kNOwATAXIA "I am honored to be joining the strong team at NAF, and look forward to building on the work that has impacted so many people with Ataxia since the organization was founded in 1957. Research supported by NAF continues to make progress in the search for treatments and an eventual cure for #Ata…

1
#26 Kyle Bryant: Shifting Into High Gear at #2019AAC 24:23

5+ y ago24:23

24:23

Hi #kNOwATAXIA Nation! Happy #thoughtfultuesday. Today, I’m sharing a podcast I did with my good friend Kyle Bryant. I was able to get a few minutes with him in Las Vegas at the Annual Ataxia Conference. Listen in as we talk about Kyle’s new book, Shifting Into High Gear and learn about his motivation for writing it. I think you’ll really enjoy hea…

1
Joel Sutherland, the Development Director for the National Ataxia Foundation 10:42

6y ago10:42

10:42

Hi kNOwATAXIA Nation - In this podcast I introduce you to Joel Sutherland, the Development Director for the National Ataxia Foundation. Joel explains his role at the foundation and provides updates on several initiatives like the Walk N' Rolls, Go the Extra Mile campaign, the Annual Research Drive and more. I plan to feature a coffee talk with Joel…

1
Ataxian preps for the holidays 11:00

6y ago11:00

11:00

How an Ataxian preps for the holidays and finds the joy in the season. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts…

1
Joint Mission Bataan 11:53

6y ago11:53

11:53

Bataan Memorial Death March. Ed and Mike have been battling #Ataxia and are now taking on another great challenge with the March. Right now is your opportunity to support them too! Be a part of the Joint Mission Bataan- an operation to raise awareness of #Ataxia. The Bataan Memorial Death March is a 26.2 mile hike through the high desert of the Whi…

1
Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. Part 1 14:13

6y ago14:13

14:13

PART 1 of 2 Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. WE NEED YOU!! You play a pivotal role in Ataxia research! Without your input advances can not be made. Listen in as Mellisa Biener and Dr Schmahmann talk about the importance PROM in drug trials and the value of participating in a natural history study. Live fr…

1
You signed up for the Sanford Cords registry yet? 31:04

6y ago31:04

31:04

You signed up for the Sanford Cords registry yet? What are you waiting for ? Listen in to my conversation with Austin letchur from CORDs. Will answer some of the most common questions in signing up for the registry ... Take a listen Remember Nathional Ataxia Foundation Webinar with CORDs September 18th with Sue Hagen National Ataxia Foundation MIND…

1
Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) 12:33

6y ago12:33

12:33

Thank You Nelia Aguiar and family Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) a hereditary type of Ataxia in people of Portuguese descent. Did You Know, Dana Mauro, was invited to speak at their fundraising event last weekend. They raised $12,447 for Ataxia! Way to go Azorean Pride! You are truly inspirational! iT…

1
Kara Eichelraut - patient advocate for Reata Pharmaceutical 10:32

6+ y ago10:32

10:32

Listen in as Kara Eichelraut explains to Dana Mauro about the value of Reata Pharmaceutical companies interacting with patients. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.o…

1
Cory Hannan explains the life of an Ataxian in Latin America with Dana Mauro 31:57

6+ y ago31:57

31:57

Ataxia impacts people across the globe. Ever wonder what it would be like to have ataxia and live outside of the United States. Listen in as Cory Hannan explains the life of an Ataxian in Latin America iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook ht…

1
Up close and personal with @KyleaBryant 29:29

6+ y ago29:29

29:29

Dana Mauro Up close and personal with @KyleaBryant. Learn about what Kyle's been up to, the inspiration behind his newly released movie the Ataxian, his mission to raise awareness and his personal ataxia journey. @ataxiadidyouknow About the Movie https://itunes.apple.com/us/movie/the-ataxian/id1336806410 The Ataxian examines the life of Kyle Bryant…

1
Do you know what Schmahmann’s syndrome is? 16:58

6+ y ago16:58

16:58

Do you know what Schmahmann’s syndrome is? It can affect someone with Ataxia. Listen in to learn more with Dana Mauro iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagr…

1
Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia 25:03

6+ y ago25:03

25:03

Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driv…

1
Want to be involved in the Ataxian PROM? 9:27

6+ y ago9:27

9:27

Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved. Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)! If you have any questions, please do not hesitate to email us at cerebellum@mgh.harvard.edu. You can also reach out to our Research…

1
Cindy DeMint support Group leader making a different 13:14

6+ y ago13:14

13:14

#DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram http…

1
Joel Sutherland with DYK 14:24

6+ y ago14:24

14:24

Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes itunes.apple.com/us/podcast/know-…/id1312495222?mt SoundCloud @user-536040137-843024175 Facebook www.facebook.com/ataxiadidyouknow/ Website www.rideforjohn.o…

1
Megan Kaiser discovering latest research. 10:30

6+ y ago10:30

10:30

Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC Podcast Show Notes #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-84302417…

1
Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC 8:54

6+ y ago8:54

8:54

Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC Podcast Show Notes #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-8…

1
Tips for first time attendees to the Ataxia Conference 5:46

6+ y ago5:46

5:46

Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.Oleh Dana Mauro

1
Keeping a Medical Binder 4:06

6+ y ago4:06

4:06

So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a co…

1
Ataxia Suport Groups They get me ! 6:02

6+ y ago6:02

6:02

Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.Oleh Dana Mauro

1
Did You Know Suport Groups are extended family and friends 5:41

7y ago5:41

5:41

Dana Mauro: Talks about the importance of a good support system.Oleh Dana Mauro

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