S2 Episode #9: YOU’RE NOT ALONE WITH A RARE DIAGNOSIS
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg sits down with actress Madison McLaughlin to discuss her family’s journey with an extremely rare chronic illness.
At age 11, Madison made her way to Los Angeles to pursue a career in acting, which led to roles on Chicago PD, Supernatural, and Arrow. Now 24, two of Madison’s three younger sisters have been diagnosed with HBSL (full name: hypomyelination with brainstem and spinal cord involvement and leg spasticity), which affects a person’s brain and spinal cord and impairs motor function.
There are only 19 official diagnoses of HBSL throughout the world, including Madison’s sisters.
Dealing with any chronic illness is challenging, but that challenge can be compounded by the isolation and uncertainty of a rare diagnosis. Madison joins the UpBeat to share her family’s search for a diagnosis and their experience living with such a rare condition.
S2 Episode #8: WHEREVER YOU ARE, YOU MAKE THAT YOUR FAMILY AND YOUR HOME
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg is joined by Jenny Winter, a mother from San Diego who has a special perspective to share on a situation many people are experiencing all over the world.
Social distancing and quarantining have been a part of almost everyone’s life since the beginning of the COVID-19 pandemic. Jenny and her son Caleb had a lengthy headstart. Due to Caleb’s leukemia diagnosis a little over a year ago, he has been isolating at the hospital or home for the past 14 months, at times even unable to visit with his siblings.
S2 Episode #7: JUVENILE ARTHRITIS: THE JOURNEY TO RAISE AWARENESS FOR SOPHIA
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg is joined by Joel Rothman and Laura Schultz, longtime friends of CoachArt in Los Angeles.
One of the most amazing aspects of our CoachArt families is their tireless willingness to give back and help others. We’re constantly inspired by the parents and children who have made the commitment to support similar families in need, even while they themselves undertake the difficult challenge of fighting chronic illness.
S2 Episode #6: 5 TIPS FOR COPING IN A PANDEMIC
Dr. Theopia Jackson, chair of the clinical psychology degree program at Saybrook University in Oakland, CA, has a long history of providing therapy services to families dealing with chronic illness and complex trauma.
In our recent interview for The UpBeat Podcast, I was surprised when she told me that many of the coping mechanisms those families use for navigating the stresses of complicated health situations would also benefit all of us during the COVID-19 coronavirus pandemic.
S2 Episode #5: I’m Here and I Believe You
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg sits down for a chat with Alexa Chronister, the inspiring Founder and President of Fight Like A Warrior, a non-profit organization “working to unite, empower, and advocate for those fighting life-altering health conditions around the world.”
Alexa’s medical challenges started early in childhood but went undiagnosed for years. Doctors originally shrugged off her problems as “growing pains,” but by the time she got to high school, Alexa’s health challenges took her back for a diagnosis — and she was told by a physician that the pain was “in her head.”
Her amazing parents taught her about self-advocacy and empowerment, so she persisted in seeking answers, and finally she was diagnosed with Ehlers Danlos syndrome, a connective tissue disorder, and Postural Orthostatic Tachycardia Syndrome, a condition affecting the flow of blood through the body.
S2 Episode #4: Jessie’s JoyJars: How a Passion Inspires Others to Never Ever Give Up
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg is joined by Erik Rees, a former pastor at the world-renowned Saddleback Church in Orange County, an author, and the father of Jessie, who was diagnosed with brain cancer in 2011 at age 11.
Immediately after her diagnosis, Jessie was inspired to help other kids at the hospital. She was concerned that kids hospitalized for long periods would be unhappy — and she wanted to change that.
So Jessie began making “JoyJars” — plastic jars that she filled with toys and all sorts of things to cheer up a sick kid.
S2 Episode #3: Helping Others Is One Of The Best Ways To Help Yourself
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg is joined by Kendell Hardy, a grandmother, HR resource professional, and last year’s CoachArt Bay Area volunteer of the year.
Kendell has been a great friend of CoachArt, teaching many children sewing and cooking, two passions that she found at a very early age. She’s here to tell us how she got started, how much she enjoys volunteering with CoachArt students, and how giving your best to someone else helps bring out the best in you.
S2 Episode #2: With Laughter, There is Hope
In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg has the chance to chat with Derek Hughes, a “stand-up magician” who performs live all across the country and has appeared on numerous TV shows, including America’s Got Talent (where he was a finalist on season 10). Derek was also a featured performer at our 2019CoachArt Gala of Champions.
As a child, Derek was born prematurely with an atrial septal defect — a hole between two chambers of his heart. Derek shares the amazing story of how he overcame this challenging condition and how his love of magic and performing helped him along the way. He also discusses tips for how kids with chronic illnesses can find their passion and how his involvement with the CoachArt Gala of Champions impacted his life and his work.
S2 Episode #1: Key Benefits of Guided Meditation
In this week’s episode of The UpBeat Podcast powered by CoachArt, our host Greg sits down with Lizzie, a Senior Program Manager at CoachArt and a guided meditation and yoga instructor, who is devoted to cultivating healing, positivity, and wellbeing. She leads a guided meditation and discusses the key benefit of this practice.
Lizzie recently started her own company called Pursuit of Self, which explores global wellness practices to empower all to heal and thrive.
Episode #16: How Hobbies Can Turn Into Careers for Children with Chronic Illness
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne sit down with Stephen Schneider, an inspiring 19-year-old who was diagnosed with a rare heart disease eight years ago.
Soon after, Stephen underwent a successful heart transplant and began to use his new computer to take his mind off the long process of treatment and recovery. He started to make videos for himself and for others — and today that hobby has grown into a career. Stephen’s here to tell us all about his road to recovery and how video production went from a fun diversion to a full-time job.
Episode #15: Inspirational Stories of Chronic Illness Survivors That Succeed in Business
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne chat with Callae, a Beverly Hills-based jewelry designer who was diagnosed with brain cancer right around the time she launched her jewelry company CB Luxe.
Episode #14: Overcoming Physical & Emotional Challenges in Pursuit of Passion
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne are joined by Deja Young, a 23-year-old track and field athlete who was born with shoulder dystocia that caused substantial nerve damage. As a college athlete, Deja learned of the Paralympic Games, set a goal for herself, and in 2016, Deja won two gold medals at the 2016 games in Rio de Janeiro. She’s here on the podcast to discuss how she overcame her physical challenges and to give tips and encouragement to others so they can do the same.
For more about Deja and other amazing influential athletes, read the blog post here.
Episode #13: Recovery is a Process
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne sit down with Deena, a psychotherapist whose daughter Nomi was diagnosed with leukemia at age 10 in 2014.
Deena shares insightful anecdotes such as:
-The story of how Nomi’s life was saved by her older sister Maya
-How her experiences led her to move the main focus of her psychotherapy practice to treat families impacted by cancer and other illnesses
– Tips and advice on how to get the most emotional and personal growth from a battle — something called “post-traumatic growth”
For more information on post-traumatic growth, read the blog post here.
Episode #12: Resources for Dealing With the Emotional Impacts of a Childhood Cancer Diagnosis
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne are joined by Kumiko, a CoachArt parent whose son Kazuma was diagnosed with acute lymphoblastic leukemia in 2011. Kazuma and Kumiko both experienced a common side effect of childhood chronic illness that isn’t discussed enough — they both struggled with depression.
Kumiko stresses the importance of understanding that you’re not alone and there is help out there. Listen to Kumiko’s interview for great tips on:
– How to build a support system for yourself and your child.
– Ways to identify emotional stress and suggestions on ways to reduce this stress.
– Homeopathic resources to help alleviate depression.
For more resources on dealing with your child’s diagnosis, read our full blog post here.
Episode #11: The Power of Positivity
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne are joined by Radwa and Tamer, whose son Zein was diagnosed with stage four Neuroblastoma at the age of 5. Over the next seven years, Zein overcame cancer four different times and his parents are here to share the inspiring story of their family’s long fight and explain their belief in the power of the mind — how staying positive has kept their family thriving in the face of difficult circumstances.
Radwa and Tamer share intimate details of their cancer journey and offer wonderful tips for finding the light in any darkness. Listen to their interview for helpful takeaways, including:
– Communication tips on how to talk to your child about their illness in ways that they will understand.
– Advice on self-care and putting your marriage first, even when it seems impossible.
– Fun suggestions on ways to make the most of every situation, even hospital stays!
For more resources on maintaining a positive attitude while facing adversity, read our full blog post here.
Episode #10: The Healing Powers of Art & Creativity
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne are joined by Nomi, a CoachArt student who was diagnosed with a rare form of leukemia in 2014. Now 16, Nomi beat cancer thanks to a bone marrow transplant from her sister. She’s here to discuss the emotional and physical journey of her illness and how art was an important part of that battle.
Nomi shares some tips on how to find an artistic and creative outlet and how it can help anyone, especially those impacted by chronic illness. At CoachArt, we’re always very excited about spreading the benefits of artistic endeavors and we wanted to share some other information we’ve found. CLICK HERE to read the full article.
Episode #9: How I Learned to Cope With My Child’s Cancer Diagnosis
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne sit down with their very special guest Marc — Roxanne’s husband.
Marc opens up about what it was like to be there for their daughter Aleyna’s cancer diagnosis when she was 6 years old. He also shares stories of their ensuing cancer fight and gives tips on navigating the emotional strain of it all.
We previously spoke with Roxanne in The UpBeat Podcast Episode 4 and hearing two unique viewpoints from the same family was eye-opening. When a family is rocked with a life changing event like cancer, each individual is affected in such unique ways.
Thinking about Marc and Roxanne, we found some other good resources for recognizing and understanding how different people cope in different and equally effective ways — and we wanted to share some of our favorites. Read the full blog post here.
Episode #8: Why Sports Programs are Important for Children With Special Needs
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne are joined by Denise, an ice skating instructor who’s been giving lessons to children with special needs for 22 years at the Oakland Ice Center in Oakland, California.
A competitive figure skater growing up, when Denise was 16 she saw Olympic champion Dorothy Hamill conduct a skating program for children with blindness and immediately knew her life had changed. Denise started the adaptive skating program in Oakland and has gone on to help children with special needs in many ways — she’s now even an official school inclusion assistant and a certified autism movement therapist.
In Denise’s interview, she shares her many experiences helping the lives of kids and adults on and off the ice, including the wonderful story of an autistic child’s 5-year journey to learn to skate. She has a unique perspective on the benefits of ice skating for special needs children, which we found instructive here at CoachArt, as we strive to provide a range of athletics programs for children in the same situations.
For additional resources on finding adaptive sporting programs near you, read the full blog post.
Episode #7: Activities for Kids With Chronic Illnesses
In this week’s episode of The UpBeat Podcast powered by CoachArt, our co-hosts Greg and Roxanne are joined by Brandon, whose son Aiden has been a long-time CoachArt student.
Aiden was diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disorder that poses numerous challenges, both great and small, for him and his family. Brandon discusses his experience throughout the diagnosis process, including the initial emotional impact on his family, and also shares how he’s learned to help Aiden and their family thrive on a day-to-day basis.
One of the issues that Brandon faces, and that affects every family impacted by childhood chronic illness, is finding appropriate activities for their child. CoachArt’s goal is to assist in that process and there are also other helpful resources to find fun, healthy activities for children impacted by chronic illness. Read the full blog post here to check out our suggestions.
Episode #6: A Parent’s Journey With Individualized Education Plans
In this week’s episode of The Upbeat Podcast powered by CoachArt, our host Greg is joined by Felicia Ford, an amazing single mother whose 17-year-old daughter Faith was born with cerebral palsy.
Felicia shares her inspiring story of how her frightening experience at Faith’s birth motivated her to dive in and do all she could for Faith and for parents in similar situations.
Read the full blog post here for Felicia’s wonderful advice on Individualized Education Plans (IEPs).
Episode #5: Anxiety in Children as a Result of Their Illness: How to Identify it & 5 Ways to Combat it
In this week’s episode of The UpBeat Podcast powered by CoachArt, our host Greg sits down with Megan Gallagher, a 23-year-old mental health advocate and motivational speaker, to discuss her experience with an issue familiar to many families impacted by childhood chronic illness — severe anxiety.
After years of her own fight with crippling anxiety and panic attacks, Megan now travels the country speaking to middle and high school students about managing their anxiety, loving themselves, and being in tune with their bodies.
Read the full blog post here for Megan’s easy-to-implement remedies on how to combat severe anxiety.
Episode #4: 3 Amazing Nonprofit Organizations for Kids Diagnosed With Cancer
In this week’s episode of The UpBeat Podcast powered by CoachArt, co-host Greg is joined by special guest host Elena, one of CoachArt’s board members (and our interviewee on podcast episode 3), as they sit down to chat with CoachArt’s marketing director, Roxanne.
Roxanne switches seats from co-host to interviewee and shares her experience with pediatric cancer. Her daughter, Aleyna, was diagnosed with Wilms tumor at age 6. Roxanne provides tips and advice on how to help your child navigate the social pressures encountered by children with chronic illness and tells a touching story of how a little note to a classmate’s parents led to a big gesture from new friends.
Click here for the full blog post.
Episode #3: Communication Tips for Families of Kids Impacted by Chronic Illness
In this week’s episode of The UpBeat Podcast powered by CoachArt, co-hosts Greg and Roxanne sit down with CoachArt parent and board member, Elena, to discuss her family’s experiences with chronic illness. Her unique journey began when her son Brad was diagnosed with a pediatric brain tumor at the age of 14.
Much of Elena’s guidance centers on communication. And sometimes it’s hard to take stock of all the avenues of communication that will experience stress as the family navigates their new path — between the diagnosed and their family; between the diagnosed and their peers; within the family including the diagnosed; between the parents of the child; and all other relationships that exist within and around a family.
For more tips and resources on communication when dealing with a childhood chronic illness, visit our full post.
Episode #2: 3 Tips for Dealing With “Information Overload” After Your Child’s Diagnosis
In this week’s episode of The UpBeat Podcast, powered by CoachArt, co-hosts Greg and Roxanne chat with Lacey, whose 10-year-old son Levi is one of CoachArt’s newest members.
At just 3 days old, Levi was diagnosed with craniosynostosis and cleft palate. Since then, Lacey and her family have experienced all the ups and downs that living with a chronic illness entails, without a community of like-minded parents and families … until she found us here at The UpBeat! Now Lacey’s ready to share some advice and stories about how her family has navigated the journey of Levi’s illness, including its effects on his schooling, his friends, and his parents.
Lacey has lots of insightful info, including her top three tips for families with children who have recently been diagnosed with a chronic illness. Read the full blog post..
Episode #1: Interview with Tiger Livy Author, Erin Garcia – Plus 5 Additional Children’s Books That Address Childhood Chronic Illness
In this week’s episode of The UpBeat Podcast powered by CoachArt, co-hosts Greg and Roxanne sit down with Erin Garcia, co-author of the brand new children’s book, Tiger Livy.
When a rare autoimmune disease suddenly turned her niece’s life upside down, Erin immediately looked for books they could share. But when she couldn’t find many age-appropriate stories about kids with chronic illnesses, she did what any English teacher would do — she wrote her own. In our new podcast, she shares Livy’s story and its impact on the lives of those around her. She also explains how this wonderful new book can help both kids and their families who are confronting similar situations and discusses how she created this inspiring tale of child empowerment.
Our chat with Erin also reminded us that it can indeed be difficult to find good stories for children dealing with chronic illnesses. For a list of our favorites, read the full blog post.
Meet our UpBeat Podcast Host
Greg hosts The UpBeat Podcast and helps direct the platform’s content as an extension of CoachArt, where he serves as Executive Director. He was previously the Development Director of Friends of the Urban Forest in San Francisco, and has consulted for nonprofits in the arts, environment, LGBT and education sectors to optimize their online fundraising. Greg’s diverse background in nonprofit, political, and entertainment adds an innovative perspective to The UpBeat.