In episode 143, host Kevin Schaefer talks with Cory Lee from Lafayette, Georgia. A renowned expert on disabled traveling, he has visited all seven continents from his wheelchair. He runs the Curb Free With Cory Lee blog and takes part in speaking engagements around the world. Join the two as they discuss growing up with SMA, Cory’s travel origins, and his hopes for the future of accessible travel.

Cory’s Instagram: https://www.instagram.com/curbfreecorylee/
Cory’s website: https://curbfreewithcorylee.com/

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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.

#143: Cory Lee, Travel Blogger and Influencer With SMA

Lumina 

Original Music
Night+Feel the rhythm+Wathever Lola wants
Lounge electronic beats  and  live band 

Sharon Itoi / Piano, Voice and lyrics
Gabriela Espinosa / Voice and Lyrics
Archi Gallardo / Electronic drums and DJ producer Mxchnckln

Lumina  Night,Feel The Rhythm, Lola Wants

курю на этаже! (prod. babyd3mon)

In this World Shared Practice Forum podcast, we discuss the Pediatric Sepsis Data CoLaboratory (Sepsis CoLab), an international open data-sharing network to address pediatric sepsis mortality and morbidity. Drs. Kissoon, Ansermino, and Akech discuss the challenges related to the collection and sharing of data in a global context, the latest advancements in sepsis research and treatment, and how they believe this work will drive better patient outcomes.

LEARNING OBJECTIVES
- Recognize the role of the Sepsis CoLab in global sepsis care
- Describe the challenges and strategies for data sharing in healthcare
- Summarize the importance of standardized data collection in sepsis research
- Discuss some specific examples of how data can be used to support initiatives to improve the care of children with sepsis

AUTHORS
Niranjan "Tex" Kissoon﻿, MBBS, FRCP(C), MCCM, FACPE
Professor, Department of Pediatrics, 
University of British Columbia,
Investigator, BCCH Research Institute
President, Global Sepsis Alliance
Institute for Global Health
BC Children's Hospital and BC Women's Hospital & Health Centre

Mark Ansermino, MBBCh
Professor
University of British Columbia
Executive Medical Director for Global Health
BC Children's Hospital

Samuel Akech﻿, MD,
Consultant Pediatrician & Epidemiologist
KEMRI-Wellcome Trust

DATE
Initial publication date: October 21, 2024.

ADDITIONAL RESOURCES
Sepsis CoLab: https://wfpiccs.org/pediatric-sepsis-colab/

Pediatric Sepsis CoLab Membership Application: https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79

Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Kissoon NT, Ansermino JM, Akech S, Wolkbrink TA. Improving Sepsis Care: A Data-Driven Approach. 10/2024. OPENPediatrics. https://soundcloud.com/openpediatrics/improving-sepsis-care-a-data-driven-approach-openpediatrics.

Improving Sepsis Care: A Data-Driven Approach by T. Wolbrink et al | OPENPediatrics

In episode 144, host Kevin Schaefer talks with Doug McCullough from central New Jersey. The author of “A Billion People in the Shadows,” a new book about understanding disability, Doug previously worked at Johnson & Johnson Pharmaceuticals and has a background in public speaking. He talks about growing up with SMA type 3, navigating employment with a disability, and advocating for an inclusive society.

Doug’s book: https://publishyourpurpose.com/books/a-billion-people-in-the-shadows-the-ultimate-1-hour-guide-to-understanding-disability/

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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

#144: Doug McCullough, Advocate and Author With SMA

Амнезию курю, тебя прикурю я,
Ты хотел бежать, пулям под силу тебя достать,
                   Тебя достать, пулям.
Сироп в пузе заставляет меня танцевать,
                           Мои пули заставят тебя быстрее бежать,
Быстрее бежать, заставят тебя быстрее побежать.

Амнезия во мне — пули уже в тебе,
                                      Ты лежишь на дне — я лечу highway,
Типа highway — высоко сейчас,
                       Я выдуваю, выдуваю газ.
Выдуваю газ, я что? Выдуваю газ.
                                               Выдуваю что?

amnezia (old)

The Sharjah Museums Authority is hosting a special conference titled “SAWA: A Decade of Cross-Cultural Museum Learning” celebrating their museum studies program and their ongoing collaboration with Germany. Khawla Aqeel AlAwadhi, Head of the Museums Affairs Section at the Sharjah Museums Authority discusss this initiative that is designed to offer professional qualification and learning opportunities for emerging museum professionals.

10 Years of SAWA Museum Studies Program with Khawla Aqeel AlAwadhi

What is SAWA? And how much power do museums and their curators have?

The General Director of the Sharjah Museums Authority, Aisha Deemas, shares not only the significance of the program, but its growth as she rose up the ranks in the authority.

SAWA: A Decade of Cross-Cultural Museum Learning with Aisha Deemas

In episode 145, host Kevin Schaefer talks with Carrie Manriquez from Sacramento, CA. Carrie is an elementary school principal, and her 24-year-old son Ryan has SMA type 2. She talks about her experiences as a parent and caregiver, connecting with the SMA community, and helping Ryan transition to adulthood.

================================

To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#145: Carrie Manriquez, Mother of adult son with SMA

This is a beat I made by sampling aluminum cans...many years ago. The vocals are intentionally distorted to reflect my feeling of obscurity. I was living off recycling and scrap metal and riding the bus around. Honestly, it's a bop but I didn't want anyone to hear it at the time. I think the world is ready now.

Collecting Cans

In episode 146, host Kevin Schaefer talks with TJ Wall from Texarkana, Texas. TJ is working on his master’s in education at Texas A&M University, and he hopes to become a high school football coach. He talks about growing up with SMA, his love of sports, and his future aspirations.

================================

To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#146: TJ Wall, graduate student with SMA

Oooooooohhhhh Druski

In episode 147, host Kevin Schaefer talks with Brandi Lewis from Birmingham, Alabama. A blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder, Brandi is passionate about helping others diagnosed with chronic illnesses. She herself has been diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder patients. She notes that her greatest accomplishment is having saved three lives by encouraging people to register to become bone marrow donors. Brandi is a dog lover of a labradoodle, Milo, and thinks laughter is the best medicine. 

Follow Brandi on Instagram at @_brandilewis_!

Brandi’s website: www.brandilewis.com
Brandi’s column: https://pnhnews.com/category/columns/from-fear-to-fighter-a-column-by-brandi-lewis/

================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.

#147: Brandi Lewis, rare disease advocate and speaker

MV: https://youtu.be/xNHfwSv8UTc?si=EVJNt9MQBlJ6PqbV

Shogun's Wrath

In episode 148, host Kevin Schaefer talks with Ashley Fox and Madeline Engel from California. Ashley has SMA, and Madeline became her best friend and caregiver when they were in college. They discuss the nuances of friendship and caregiving, plus touch on confronting internalized ableism and navigating graduate school and careers.

================================

To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#148: Ashley Fox and Madeline Engel discuss friendship and caregiving

In episode 149, host Kevin Schaefer talks with Dr. Jessica Keogh from Philadelphia, Pennsylvania. An educator, disability advocate, and certified life coach, she discusses growing up with SMA, living independently, navigating relationships, and becoming an advocate.

Jessica’s website: https://www.faithabovemyability.org/

================================

To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

‘Eyes On’ is all about the significant happenings and events taking place in the Emirate of Sharjah. Covering the major aspects of life in the Emirate such as real estate, health, education, culture, and more. Be it a corporate exhibition or a family funfair. Be it for the professional or the child in you... Tune in before the weekend to find out how to plan your weekend in Sharjah.

tg: t.me/s4lv4t0r33 
inst: https://www.instagram.com/salvatxre9clip
feats on repost

Fuck очереднярам🤙

Ensamble de musica electrónica lounge para bailar y fiestas de cocktail. Está   formado por Sharon Itoi /Piano y Voz. Gabriela Espinosa Voz y Archi Gallardo /Drums and Producer.

https://linktr.ee/pjiggydaboo
P JIGGY DA BOO IS #NEXTUP
features for 10$, dm for business inquiries

* Beach Goth * Pale Girl  * Que Magico *

I appreciate you.

Daily, digital coverage of the latest SMA news and perspectives.

Thee Artist.
instagram: theeofficial_sma
email: smamediacreatives@gmail.com

New tracks tagged #sma