Because We Are Strong

Meet Gigi Robinson:

I am a digital artist, health & wellness advocate, current M.S. Candidate, and graduate of the University of Southern California with a Bachelors in Fine Arts, Design, and Photography. 

I have strong presences across Tik Tok (100k views on average) and Instagram (15.5k+ followers), and, as of this year, I have been developing my YouTube and Podcast content. 

I have always been a creative innovator and possessed a high-level work ethic, especially when it comes to making a difference with my projects. Originally, I wanted to be a photographer, but, since then, have transitioned my skills of image-making into those that create an impact through storytelling. Living with chronic illnesses, I have been challenged in many ways with everyday tasks, such as showering, cooking, walking, and even sitting down.

Despite all of the physical and psychological challenges that threatened the path to becoming who I am today, I have challenged adversity and dedicated a majority of my life to becoming a master content creator, always keeping my values of creating positive and impactful messages to my diverse audience as a priority. 

Content creation has been my passion since day 1 and I do not see that changing any time soon. I made a goal for 2021 to level up the impact my content has. Keep reading to see how I am taking steps toward that goal.

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Connect with Gigi:

https://www.gigirobinson.com/social-1
https://www.gigirobinson.com/contact
@itsgigirobinson

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This episode was produced and edited by : 

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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Meet Michaela:

Michaela G. Margida is one very smart cookie who has dedicated her life to acquiring and translating knowledge into meaningful actions that improve the world. She happens to be a Ph.D. scientist, and she is very proud of that, because she worked extremely hard for it! However, she is a human being first, and has worked hard to define her self-worth outside of her achievements. So here are some things about Michaela the human that you should know:

Michaela’s favorite quote was said by Anne Frank: “How wonderful it is that nobody need wait a single moment before starting to improve the world.” Michaela is a big believer that the world needs her now - not after she has lost ten pounds, gotten a personal record in the marathon, revamped her entire wardrobe, gotten a high-paying job, or whatever other metric the world is using to define success today - and that the best way to improve the world is by being her authentic self.

Her second favorite quote was said by her former boss, U.S. Senator Cory Booker: “Don't let your inability to do everything undermine your determination to do something.” It’s this attitude that inspired Michaela and her brother Gregory to start The Valentine Project in 2010, a 501(c)3 nonprofit that serves children affected by cancer or a chronic illness and their siblings. The Valentine Project works year-round toward the lofty goal of “making the world a kinder place, one child at a time” by recognizing the immense power that small acts of love have to create moments of hope and joy in a world that can sometimes feel very dark. Specifically, The Valentine Project sends personalized gifts to kids diagnosed with cancer or a chronic illness and their siblings each Valentine’s Day, and sends Kindness Cards to these special kids to continue cultivating compassion all year round.

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Connect with Michaela:

The Valentine Project website: https://thevalentineproject.org/

TVP Facebook: https://www.facebook.com/thevalentineprojectusa 

TVP Instagram: https://www.instagram.com/the_valentine_project/ 

TVP Twitter: https://twitter.com/valentineproj

Michaela Facebook: https://www.facebook.com/michaela.gabrielle.cecilia/

Michaela Instagram: https://www.instagram.com/dr.michaelagabrielle/ 

Michaela LinkedIn: https://www.linkedin.com/in/michaelamargida/ _______________________________________________

This episode was edited by: Ruwan Basnayake

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This episode was sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey Peeps! I’m your host Kristine and I’m flying solo! Today we are sitting down with Tami, founder of The Fibro Spot, an online shop dedicated to people with Fibromyalgia. Tami was diagnosed with Fibromyalgia herself in 2009 and I am sure we will have tons in common! Let’s dive in!

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This episode was edited by: Ruwan T.

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Meet Kristen:

Have you ever had the feeling that you’re off course? Or maybe that life is moving so fast that you don’t even have time to catch your breath, never mind check in with yourself? Without setting time and space to be with our inner world, the outer world takes over. However, when we establish and cultivate a daily centering practice, we learn to navigate the outer world with intention and attention.

I am a life coach, mindfulness teacher, podcast host, and author of Better Daily Mindfulness Habits. I help people live a more conscious, connected, and intentional life.

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Connect with Kristen:

https://www.instagram.com/kristenmanieri_/

https://www.facebook.com/60MindfulMinutes

https://www.kristenmanieri.com
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This episode was edited by: Ruwan Basnayake

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This Episode Is Sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

For a Pharma company with an approved treatment for a rare disease, patient advocacy and community relations play an integral role in its expansion and progress. Without the support and trust of the rare disease community a pharmaceutical company cannot reach its patients, a reason why building and fostering strong relationships with the patient audience is absolutely critical. Amy Grover has been advocating, educating, and empowering the rare disease patient community for over 13 years. She stands at the helm of Catalysts’ patient outreach initiatives, making bonds stronger for a mutually beneficial existence. Amy partners with related patient organizations and assists in their efforts to help the patient community. She conducts patient advisory boards to ensure Catalyst is creating relevant and meaningful tools and resources to provide to patients. Amy regularly connects with the LEMS patient community to confirm that Catalyst is doing right by the community and living the mission of the company. While Amy is not entrenched in the research and development of life science products, her work is deeply connected to the rare disease space. It is her mission to create awareness for LEMS which is an ultra-rare disease where there hasn't been attention given to the community in the past. She understands the importance of her responsibilities as a liaison between her company and the patients.

Amy began her career in advocacy at Global Genes, a non-profit based in Southern California dedicated to serving the 350 million people affected by rare diseases globally. Amy is dedicated advocacy professional with 10 years of experience in educating over 500 small, medium, and large patient organizations on development and patient engagement. She managed the foundation alliance at Global Genes and offered counseling, tools, and resources. Through these efforts and educational opportunities, these organizations were able to grow and develop and excelled in finding and funding researchers, policy and legislation, capacity building, and community support.

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This episode:
• The importance of building community and connections in rare diseases.

• Why all stakeholders in rare diseases need to have open and honest communication.

• What does advocacy mean in rare diseases, and how can patients, parents, and caregivers fit into the advocacy role?
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Connect with Amy

@theamygrover

@CatalystForRare

https://www.linkedin.com/in/amy-grover-b7464429/
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This episode was edited by : Ruwan Basnayake

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey Peeps! It’s Kristine and I am flying solo! Today we are talking with Aaron Huey, the founder of Parenting Teens that Struggle and the host of the #1 parenting podcast Beyond Risk and Back. He is also a Parent Coach, teen addiction interventionist, a facilitator of powerful parenting events, and a happy husband and father to two adults. This episode is especially for all you parents out there, so let’s dive in!
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Meet Aaron:
Aaron is extremely ADHD.

Founder of “Parenting Teens that Struggle” and the Host of the #1 Parenting Podcast “Beyond Risk and Back” which is Mental Health News Radio Network's highest-rated show internationally. He is also a Parent Coach for parents of kids at risk, a teen addiction interventionist, facilitates powerful parenting events, and is a very happy husband and father of 2 young adults.

Aaron is an internationally known lecturer on archetypal imagery, body language, and martial arts and the Founder and President of Fire Mountain Programs, and since 2004 has run kids camps, teen camps, and family programming. In 2009, he and his wife Christine opened a residential Mental Health and Dependency recovery treatment center for teens ages 12-17 in Colorado. Fire Mountain Residential Treatment Center was in 2019 named one of the Top 50 Healthcare Providers in the United States and in 2020 named one of the Top 100 Innovators in Healthcare.

Find him on Facebook at “Parenting Teens That Struggle” for a TON of free information and advice.

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Connect with Aaron:
https://www.facebook.com/groups/parentingteensthatstruggle

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This Episode was Edited by: 

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Through his tireless work, Sam continues to be committed to the betterment of communities. In 2016, Sam received the Governor General’s Sovereign’s Volunteer Medal as a past recipient of the Governor General’s Caring Canadian Award. Also, in 2012 he received the Queen’s Diamond Jubilee Medal and the Rick Hansen Difference Maker medallion. As a writer and blogger, his passion is to inspire and motivate others in their personal and professional development through his many adventures and reflections on life’s journey.

Sam has mentored hundreds and engaged with thousands of students and professionals over the last many years and as a result, was the Co-Founder and Chief Motivating Officer of GradusOne, an organization to help high school/post-secondary and recent graduates in their life and career. More recently, after a successful few years, GradusOne merged with the League of Innovators (LOI) and he now is an advisor to LOI. Added to this, Sam is an accomplished speaker and storyteller. Either as a mentor/coach to a single student or speaking to hundreds as a keynote speaker, he shares his experiences through storytelling and has helped thousands in the pursuit of their dreams. he has just recently released his latest book called, ‘Lost and Found: Seeking the Past and Finding Myself’, where he went in search of his ancestral roots and discovered himself. Amazon.ca In 2011, Sam delivered a TEDxSFU speech about ‘Discovering the Extraordinary in the Ordinary’. This then led to a published book on personal storytelling and helping the reader build their story-voice – https://www.lulu.com/shop/search.ep?keyWords=sam+thiara&type=. He is now writing his next book about his adventures to India to find his ancestral roots and in the process, better understand his identity.

Prior to SFU, Sam was part of the Vancouver 2010 Olympic Bid Committee and ICBC road safety where it was about about community building. With 45 + volunteer organizations that Sam has been involved with from the board, advisory to volunteer level, he has dedicated countless hours to his communities. Presently, he is working with multiple organizations such as the SFU Alumni Association, Shanti Uganda, Room to Read and many more.

Sam consistently strives to discover the extraordinary in the ordinary and his journey is documented at Sams50-50.com. His favorite saying and what he lives by: “Everyone’s life is an autobiography…make yours worth reading!”

Connect with Sam
Website – http://sam-thiara.com

Book - http://sam-thiara.com/mywriting/

Linked In - https://www.linkedin.com/in/sthiara/

Instagram - https://www.instagram.com/samthiara/

Twitter- https://twitter.com/notifications

Facebook - https://www.facebook.com/sam.thiara.site

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey peeps, this week I am so excited to sit down and chat with Amanda, not only is she a member of this RARE. herd but she is also a therapist.

Meet Amanda:

I'm a mom to a 12-year old with Prader-Willi Syndrome as well as a licensed marriage and family therapist.

My son got his diagnosis when he was 7 weeks old. It turned my life upside down and I quickly learned that there wasn't much space for the "hard" feelings related to parenting a child with a disability. It's become a bit of a life mission to give parents space to talk about the hardship, while also recognizing that they love their child so much. Pain and love and exist at the same time!

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Connect with Amanda:
@amanda.griffith.atkins
www.amandaatkinschicago.com

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This episodes was sponsored by :

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey Peeps welcome back to another episode of because we are strong this week we are sitting down with Riley who was diagnosed in utero as a spina beautiful. Riley is using her experience to move mountains and show others how powerful adaptive beauty really is. I'm your host Kristine so let's dive in.

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Meet Heather:

Heather Hutchison is an award-winning singer/songwriter and author of the new memoir, Holding On by Letting Go. She shares her story of life as a blind person both in Canada and Latin America, her struggles with anxiety and depression, the unique challenges of being hospitalized for psychiatric care during the COVID-19 pandemic, and the refuge she has always found in music. It is her story of choosing life.

Connect with Heather:
Website: www.heather-hutchison.com
Facebook: www.facebook.com/heatherhutchisonmusic
Instagram: @heatherhutchisonmusic
Twitter: @hlhutchison
Youtube: www.youtube.com/hhutchisonmusic

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show