))
Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. Rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a la ...
Today we are sitting down with Matthew Horsnell from TREND Community. TREND Community’s mission is to improve the quality of life for those living with rare and chronic diseases. They utilize technology to leverage social media to understand the disease burden. Let’s dive in! ____________________________________________ This episode was produced an…
B
Because We Are Strong
1
INTERVIEW: Tori and Congenital Heart Defect
20:15
20:15
Play later
Play later
Lists
Like
Liked
20:15
Meet Tori: Tori is a congenital heart defect survivor and has undergone multiple open-heart surgeries and procedures throughout her life, including a life-changing visit to the ER where she narrowly escaped cardiac arrest and was defibrillated 3 times. Sharing her story of resilience and lessons for living victoriously, Tori is a bestselling author…
B
Because We Are Strong
1
INTERVIEW: Kenzi Paquin & Cervical Cancer
52:49
52:49
Play later
Play later
Lists
Like
Liked
52:49
Your listening experience is extremely important to us with that being said please forgive Kristine's audio track. We apologize and will continue to work to improve your overall experience. Thank you for helping us bridge the gap between rare diseases and the rest of the world. _____________________________________________ Meet Kenzi: I had a posit…
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 Chi…
B
Because We Are Strong
1
INTERVIEW: Marie & R.A.R.E Advocates
1:06:35
1:06:35
Play later
Play later
Lists
Like
Liked
1:06:35
Meet Marie: Marie Dagenaia-Lewis is a very pridefully disabled art activist, speaker, author and creator of the Chronically Spooky series, a coloring book inspired by Disability & Chronic Illness. On top of running her own business, she is the Content Manager at Diversability and the Social Media Manager at Omnium Circus. She spent almost a decade …
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 Chi…
B
Because We Are Strong
1
INTERVIEW: Roxy Murray & Multiple Sclerosis
39:00
39:00
Play later
Play later
Lists
Like
Liked
39:00
Roxy ( aka Roxanne Channel ) Murray Is a Multiple Sclerosis Warrior , Blogger, Podcaster , Fashion Stylist and MS Advocate. She created her podcast @SickandSickening_Podcast while trying to combat her own depression and isolation to navigate life with a chronic illness as a MS sufferer from a ethnic background . Sharing real unfiltered stories from…
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 Chi…
Rare Disease Data Trust is a new and innovative patient-centric diagnostic model that accelerates the discovery and diagnosis of lost rare disease patients, through direct collaboration with large provider groups and health systems, and compliant commercial sponsorship of targeted searches. To healthcare data owners, RDDT is a first to market innov…
_____________________________________________________________ At the age of six months, Dima Hendricks was diagnosed with Sickle Cell Anemia. In the face of adversity, Dima is determined to live a life filled with purpose. As a patient advocate and a Sickle Cell Heath Coach for the CARISMA study. Dima’s mission is to help other sickle cell warriors…
B
Because We Are Strong
1
INTERVIEW: Gigi Robinson & Manifesting A Life You Love
48:17
48:17
Play later
Play later
Lists
Like
Liked
48:17
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 …
B
Because We Are Strong
1
INTERVIEW: Michaela Mardiga and The Valentine Project
47:11
47:11
Play later
Play later
Lists
Like
Liked
47:11
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…
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! ____________________________________ This episode was edited by: R…
B
Because We Are Strong
1
INTERVIEW: Kristen Manieri and Better Daily Mindfulness
33:44
33:44
Play later
Play later
Lists
Like
Liked
33:44
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…
B
Because We Are Strong
1
INTERVIEW: Amy Grover and Catalyst Pharma
29:34
29:34
Play later
Play later
Lists
Like
Liked
29:34
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 au…
B
Because We Are Strong
1
INTERVIEW: Aaron Huey and Parenting Teens that Struggle
35:49
35:49
Play later
Play later
Lists
Like
Liked
35:49
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 epi…
B
Because We Are Strong
1
INTERVIEW: Sam Thiara & Telling Your Story
38:07
38:07
Play later
Play later
Lists
Like
Liked
38:07
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 writ…
B
Because We Are Strong
1
INTERVIEW: Amanda Griffith Atkins and Prader-Willi Syndrome
30:40
30:40
Play later
Play later
Lists
Like
Liked
30:40
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 …
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. ______________________________________________ T…
B
Because We Are Strong
1
INTERVIEW: Heather Hutchinson and Holding On by Letting Go
25:17
25:17
Play later
Play later
Lists
Like
Liked
25:17
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 t…
Happy THANKSGIVING peeps! Join us as we go over a year to be grateful for. __________________________________________________________ Connect with us: @findyourrare on all your favorite social media channels https://www.findyourrare.com The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to co…
Christine Rich is an award-winning marketing executive, retired spin instructor, speaker, mentor, mama, advocate, and author. She is passionate about raising awareness about the intersection of chronic illness and mental health and advocating for better support for patients and physicians. She serves on the board of directors of the Northeast Ohio …
Theresa (aka T.Co) is the marketing coordinator for RARE. Her journey in the RARE. world began in 2017 after an unfortunate accident with a camping chair. She developed a rare condition called Complex Regional Pain Syndrome (CRPS) where her brain misfires pain signals. After extensive physical rehab and finding the right medication, Theresa went in…
Hey Peeps! Welcome back to another weekly episode of Because We are Strong! This week we are talking with Leeya, who was only 15 years old when she started down this rare journey. In her sophomore year, she was diagnosed56 with GLA which changed her and her family's lives forever. Now at just 20 years old, Leeya has found a passion for advocacy. I …
B
Because We Are Strong
1
INTERVIEW: Tri Bourne Olympian & Myositis Warrior
1:14:11
1:14:11
Play later
Play later
Lists
Like
Liked
1:14:11
Hey Peeps! It’s Kristine and I am flying solo! Today we have a very special guest, Olympic volleyball player Tri Bourne! Not only is Tri an elite athlete, he also is a RARE. athlete, having been diagnosed with Dermatomyositis in 2016. This is going to be a great episode, so let’s dive in _____________________________________________________________…
B
Because We Are Strong
1
INTERVIEW: Barby Ingles, The Cheerleader of Hope
1:00:23
1:00:23
Play later
Play later
Lists
Like
Liked
1:00:23
Meet Barby Ingles: I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach. I have been battling chronic pain since 1997. First w…
B
Because We Are Strong
1
INTERVIEW: Joe Bullok & Stage 3B Colorectal Cancer
55:03
55:03
Play later
Play later
Lists
Like
Liked
55:03
I am a survivor of stage 3b colorectal cancer. I was diagnosed in May 2018 after a routine colonoscopy. I have been NED since February of 2019. Trevor Maxwell a stage IV CRC patient who created Manuptocancer.com ask me to help him create The Howling Place Group on Facebook. We have grown to 1100 men strong in 16 months. The goal is to help men not …
B
Because We Are Strong
1
INTERVIEW: Golara Haghtalab & Immigrant: Courage Required
22:12
22:12
Play later
Play later
Lists
Like
Liked
22:12
Hey, Peeps welcome to this bonus episode of because we are strong. Today I am so excited to introduce you to an up-and-coming author who I happened to have stumbled upon while strolling on Instagram. Golara author of Immigrant courage required. The invisible challenges of the estimated 272 million international migrants is a topic that needs to be …
Show Notes: Hey peeps! Welcome back to another episode of Because We Are Strong. Today we are sitting down with a very special guest from the UK who has been nominated for a we go health award this year and is a fierce advocate. Fez has had 3 kidney transplants but continues to fight not only for himself but for others through mentoring and his wor…
Meet D-Rek Derek Canas (AKA D-REK), born a sweet, cute, seemingly healthy baby, had everything going for him until the age of 3 months, when he was surrounded by many doctors talking about transposition of the great arteries, pacemakers, and blood transfusions. His parents now had, what they called a “battery operated son”. This was a scary scenari…
Hey Peeps! Welcome back to another episode of the Because We are Strong Podcast, where we sit down every week to hear the untold stories of those in the rare disease and chronic illness community. This week we are sitting down with Seth, a rare disease fighter who founded Our Odyssey, a foundation that connects young adults who have rare diseases w…
B
Because We Are Strong
1
INTERVIEW: Charles Mickles & The Fight To Choose Hope
55:17
55:17
Play later
Play later
Lists
Like
Liked
55:17
Meet Charles: I have battled Rheumatoid Arthritis since the age of 15, have my hip replaced/revised 3 times, and 2 years ago was diagnosed with Young Onset Parkinson's Disease (I am only 46 years old). I have had many other health struggles and currently seek to share with others that even in the face of all this, there is much to be thankful for a…
Hey peeps and welcome back to another episode of the Because We Are Strong podcast. Today we are sitting down with Jenny, a blogger and entrepreneur, who battles FAP and Short Bowel Syndrome. Jenny uses her platforms and shop to raise awareness and research funds. One thing that Jenny wants our community to know: They are not alone in their rare di…
B
Because We Are Strong
1
INTERVIEW: Jessica Del Toro "Miracle Baby of Colorado"
25:26
25:26
Play later
Play later
Lists
Like
Liked
25:26
Meet Jessica Romero⬇️ My name is Jessica Romero I was born October 26, 1983 at Denver General Hospital in Denver, Colorado. I was born 3 months premature weighing one pound, 7 ounces. The Rocky Mountain News crowned me the “Miracle Baby of Colorado". Everything was developed except my lungs. I was born with a collapsed left lung in which i was diag…
Join Kristine and special guest host Michelle as they talk about community, competition and how we come together to make change. 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 …
B
Because We Are Strong
1
INTERVIEW: Michelle Fruhschien & Mamabear4rare
39:56
39:56
Play later
Play later
Lists
Like
Liked
39:56
Just a mamabear advocating and spreading awareness. Motivated by my daughter, driven by change My journey is just beginning, but my mission will not be complete until treatment and/or a cure. My daughter was born and diagnosed 8 months later with a rare disease called Jordan’s Syndrome. There are about 180 individuals worldwide diagnosed and the nu…
B
Because We Are Strong
1
INTERVIEW: Alex Herold & The creation of an Adaptive Fashion Market
45:07
45:07
Play later
Play later
Lists
Like
Liked
45:07
Patti + Ricky is the Adaptive Fashion Marketplace for adults and kids with disabilities, chronic conditions, patients, seniors, and caregivers. Shopping does not typically include or embrace differences and individuals with disabilities. Patti + Ricky changes this with an inclusive shopping experience for all. Patti Connell was a mother, sister, au…
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 Chi…
This episode is in loving memory of Chrissy Grube 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 system…
B
Because We Are Strong
1
INTERVIEW: Linds Miranda & Tell Me More Gifts
54:38
54:38
Play later
Play later
Lists
Like
Liked
54:38
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 Chi…
Welcome back to another episode of Because We Are strong. This week we are sitting down with Manisha, the Patient Doc and author of Butterflies, Boards and Blessings: A Doctor’s Journey to Thriving with Lupus. 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 yo…
B
Because We Are Strong
1
INTERVIEW: Felicia Distad & Fight Like a Mama
38:22
38:22
Play later
Play later
Lists
Like
Liked
38:22
Hey Peeps! Welcome back to another episode of the Because We Are Strong podcast ! Where every week we sit down with chronic illness warriors across the globe in the hopes that sharing their stories will help bridge the gap between rare diseases and the rest of the world. This week we are chatting with Felicia, a Mother, Wife, Book Nerd, Podcaster, …
Welcome back for another episode of Because We are Strong. Today we are sitting down with Chardell, a registered dietician and mother of 3. One of Chardell’s children has Phelan-McDermid Syndrome (22q13 deletion). Currently, she is helping special needs parents take better care of their families with healthy eating. Meet Chardell: Chardell Buchanan…
This week we are sitting down with Patti, a writer, book coach, rare disease advocate, and author of loving large, a mother's rare disease memoir. Meet Patti: I'm an author, writing coach, and publishing project manager, and a proud #memoiraholic. I adore non-fiction and especially the memoir and personal narrative genre. I'm an architect of story.…
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 Chi…
Hey Peeps! Welcome back for another episode of Because we are strong! Today we are sitting down with Autumn, who has a rare medical condition called UCD also known as UCD. Autumn is 28 years old and was diagnosed with UCD when she was a young infant. The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and u…
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 Chi…
This week on the BECAUSE WE ARE STRONG PODCAST we featured Gerry a mom and PHN warrior; meet Gerry In 2018, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension. Since diagnosis, I have felt the draw to share my story so that you can find hope and inspiration from it. PH patients and chronic illness patients alike fight battles every da…
B
Because We Are Strong
1
Interview: Jessica Hatch & Hatching For Health
36:54
36:54
Play later
Play later
Lists
Like
Liked
36:54
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 Chi…
B
Because We Are Strong
1
INTERVIEW: Melody Olander & But You Don't Look Sick
48:22
48:22
Play later
Play later
Lists
Like
Liked
48:22
Hi! My name is Melody Olander and I’m the founder of the community and non-profit “But You Don’t Look Sick.” This community started by sharing my own story living with CIDP, POTS and EDS. I hope by sharing my story it helps someone feel less alone. Connect with Melody: Website: www.butudontlooksick.com Insta: @butyoudontlooksickofficial Podcast: Re…
