Greg Grunberg is best known for his role as X-wing pilot Snap Wexley in “STAR WARS”, as well as “STAR TREK”, “A STAR IS BORN” and alongside Al Pacino in the Barry Levinson film ‘PATERNO.’ In addition to his many memorable series regular roles on shows “HEROES”, “CASTLE ROCK”, “LOST”, “ALIAS” and “FELICITY”.

But what a lot of folks don't know is Greg's son Jake lives with Epilepsy. Greg is a huge advocate for those with Epilepsy! Greg is also an advocate for those who are caregivers.

Currently Grunberg stars alongside Kevin Smith in the cult classic “MAX RELOAD & THE NETHER BLASTERS” as well as the much beloved “BIG ASS SPIDER”.

Greg has written pilots & films and co-wrote the graphic novel series “DREAM JUMPER” for Scholastic. Book 2 is available everywhere now.

Grunberg hosted and produced alongside Kevin Smith the pop-culture talk show “GEEKING OUT” for AMC and currently is a staple on the popular gameshow “25 WORDS OR LESS”.

He has a few podcasts “TALK ABOUT IT”, “VESTED INTEREST”, & “AN ACTOR, COMEDIAN & A MUSICIAN WALK INTO A BAR”. Currently he is shooting his popular YouTube series “THE CAREGIVER“ for the Epilepsy community.

As a drummer, Grunberg started his celebrity rock band “THE ACTION FIGURES“ (TheActionFiguresBand.com) with fellow actors Jesse Spencer, Adrian Pasdar, Jack Coleman, and Scott Grimes benefiting TalkAboutIt.org, his foundation to raise awareness for people with Epilepsy as his eldest son has the condition.

Grunberg has been voted one of the most interesting actors to follow on Twitter & IG.

My Guest - Greg Grunberg

Connect with Greg

Talk About it - https://talkaboutit.org/

Talk About it Podcast - https://talkaboutit.org/epilepsy/podcast

The Caregiver Series - http://www.thecaregiverseries.com

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

Mike comes from a career in public policy, international development and strategy.  Previous roles have included establishing a new program at New America, a DC think tank, Budget & Planning at both the Gates Foundation & Emerson Collective, healthcare consulting at BCG, developing world university support for the World Bank Group, managing a refugee program for the International Catholic Migration Commission in Zimbabwe, and teaching math in Peace Corps Namibia.

Graglia has an MBA from Columbia where he was a Bronfman Fellow, an MA from Johns Hopkins School of Advanced International Studies where he was a Soros Fellow, and a BS in mathematics from Gonzaga University, S.J.

Graglia lives with his wife Ashley & two sons in Palo Alto, California.

About SRF

Michael Graglia’s son Tony was diagnosed with SYNGAP1 in 2018, he was 4.  Together with his wife, Ashley Evans, he founded the SynGAP Research Fund, 501c3, to accelerate the science around SYNGAP1 in order to make sure there is a therapy developed in a time frame that matters for his son, and children like him.  SRF expects to have granted over $3M to scientific labs by the end of 2022.

There are over 1,055 cases of Syngap globally, we are aware of ~330 cases in the USA.  SYNGAP1 is a disease that has multiple symptoms. 

Our children present with epilepsy, autism, intellectual disability, sleep disorder, & numerous other symptoms.  SynGAP patients are disabled for life requiring huge investments from society & sacrifices from their families. 

The patients are often on a range of medications for epilepsy, sleep & other symptoms.

The disease results from spontaneous (not inherited) mutations on the critical neurological gene, SYNGAP1.  We all have two copies of every gene, one from each parent.  As a result of the mutation causing one of those genes to be unable to make the associated protein our patients only have 50% of the necessary SynGAP protein.  It is the lack of this protein that causes this disease and all their symptoms.

SRF has multiple programs to serve patients and their families:

* We have a patient ambassador program to support newly diagnosed families.


* We engage with scientists via grants, conferences and our Webinar series.


* We are rolling out a cutting edge medical records-based digital natural history study on September 1st, 2020 in partnership with Citizen.


* SRF has a Scientific Advisory Board that includes a number of leading scientists and leaders in the genetic epilepsy space.


SRF is governed by a board of twelve different families of affected individuals.

Connect with SYGNAP1 Research Fund

Website: https://www.syngapresearchfund.org/

Facebook: https://www.facebook.com/cureSYNGAP1

Instagram: https://www.instagram.com/curesyngap1/

Twitter: https://twitter.com/cureSYNGAP1

Youtube: https://www.youtube.com/c/CureSYNGAP1/featured

LinkedIn: https://www.linkedin.com/company/curesyngap1/

Amazon Smile: https://smile.amazon.com/?ref_=smi_ge_switch_cust

Tik Tok: https://www.tiktok.com/@curesyngap1?

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

Shine Music is a 501c3 nonprofit with a mission to create universally designed, all-inclusive live music events.

Their event, the Shine Music Festival, combines the staples of a typical music festival, comprehensive accessibility plans and cutting-edge adaptive technology, to create a barrier-free spaces that allow people of all abilities the opportunity to share in the groove together. Our events are always free to ensure everyone has the ability to attend.

Shawn Satterfield, is an Inclusion Architect, her passion is creating equitable, inclusive and accessible spaces. To achieve this, she creates brands with a purpose, brands that inspire and support change-makers to integrate inclusion in their business, so together we can create a world where everyone is represented.

Her work:

Mozaro makes sure your digital assets, which convey your product and service offerings, via the web or printed materials, are accessible to all.

Shine Music, a non-profit organization, creates all accessible events where people of all abilities can collectively share in the power of live music.

Inclusion Architects® is the umbrella of which this work is done. Simply put – we work toward building an inclusive world.

Connect with Shawn:

Shine Music Festival

Website: https://www.shinemusicfestival.com/

Facebook: https://www.facebook.com/shinemusicfestivaldenver

Twitter: https://twitter.com/shinemusicfest

Instagram: https://www.instagram.com/shinemusicfestivaldenver/

Linkedin: https://www.linkedin.com/company/shine-music-llc

Youtube: https://www.youtube.com/c/ShineMusicFestivalDenver

Tik Tok: https://www.tiktok.com/@shinemusicfestival

Mozaro

Website: https://www.mozaro.com/

Linkedin: https://www.linkedin.com/company/mozaro

Facebook: https://www.facebook.com/mozarocms

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

Project Linus National Headquarters is located in Belton, Missouri. National President Patty Gregory and Vice President Mary Balagna direct and orchestrate the activities of Project Linus chapters located across the United States. Patty has been involved with the organization in the Kansas City area since April 2000 and Mary in Central Illinois since late 1998, as chapter coordinators and now as directors and officers. Mary also maintains a very busy chapter, donating an average of 350 blankets every month to local children. With chapters in all 50 states, Project Linus continues to grow. Blankets are collected locally and distributed to children in hospitals, shelters, social service agencies, or anywhere that a child might be in need of a big hug.

PATTY GREGORY

President/Chief Executive OfficerPatty has been an active participant and supporter of Project Linus for many years and has served as the Chapter Coordinator for the greater Kansas City area since April 2000. She brings additional skills from previous employment experiences in managerial and customer service positions as well as many years of leadership service in community organizations.

Patty was the recipient of the Victor Spies Foundation volunteer manager of the year award in 2003 and a Community Service award from Children’s Mercy Hospital in 2010. Before taking on this position, she owned and operated her own successful small business in the Kansas City area. She enjoys the avid support of her husband, John, in her new role. Patty is mom to Lindsey and Joseph and grandma to Brayden, Jaxon, and Aubrie.

Patty has currently been the President and CEO for 5 years. Her 5th year anniversary on the job was actually August 8th.

My Guest - Patty Gregory - Project Linus

Connection with Project Linus:

Website: https://www.projectlinus.org/

Facebook: https://www.facebook.com/projectlinus

Instagram: https://www.instagram.com/project.linus.official

YouTube: https://www.youtube.com/user/ProjectLinusHQ

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

Special Episode!

Please join us for a special advocation episode of Mindful Inspiration Champion, with my guests Shasta Kearns Moore, Gabe Triplett, and Lisa Skaalerud Ledson and I discuss the challenges of parenthood with a medically complex child. Also we will discuss and advocate for the right in Oregon to have parents as paid caregivers permanently, and why Oregon’s disabled children are about to lose their best-qualified caregivers.

Learn more about this situation in Oregon: https://www.medicalmotherhood.com/p/oregons-disabled-children-are-about?r=k2won&utm_campaign=post&utm_medium=facebook&fbclid=IwAR2Ud9KJZv_Uvv4eeY9a3aLHB9dDTSVXrmuDUUCvQIx7o9u1MYFnsGalzzA&s=r

Please read below about my guests:

Hi, my name is Shasta Kearns Moore. I used to report full-time for the Portland Tribune, but that became untenable with the needs of my children, so I resigned. Then COVID-19.

I'm still online schooling my kids and navigating the high seas of caregiving, but in May 2021, I started this weekly newsletter for parents like me. I call it Medical Motherhood, as an alternative to the "special needs mom" label. Subscriptions are free with optional tiers of support. Each Sunday, you get an original essay or original reporting and a national news roundup of issues affecting those raising disabled children.

When a child is diagnosed with a disability, there is usually a steep learning curve for the parents. Medical Motherhood will explore the hard questions: Who pays for all the extra support? What challenges will I face? How do I even know where to start?

It may not be your cup of tea. That's OK, feel free to scroll on by. But I do this work to offer hub of learning and community that I did not have as a new parent of disabled children. So if it does resonate with you, sign up.

Medical Motherhood offers news, insights and personal essays on what it's like to raise children who differ from common expectations. It is independent journalism funded by and for you. Whether you are a medical mama yourself, a health professional, a social worker, a special education instructor, or just a concerned human, you'll learn a lot here. Subscribe to get full access to the archives, quarterly behind-the-scenes posts, and access to the community.

Gabe Triplett is a Spiritual Director, community organizer, Disability justice advocate, husband, and father of three awesome children.

With a background in carpentry, pastoral care, and service coordination, Gabe feels strongly that disability families can and must unite together to build a world that actively acknowledges the belonging of each person.

Lisa Skaalerud Ledson is a married mother of three children, one whom experiences disability, I feel as though I am a determined and resolute advocate for the members of the disability community.

My drive to advocate for vulnerable populations began years ago as a registered nurse. I will forever have hope that one day all ignorance will be dissolved.

“Ignorance is all around us but awareness is around the corner if we want it to be.”

-unknown author

My Guests - Shasta Kearns Moore / Gabe Triplett / Lisa Skaalerud Ledson

Connect with Medical Motherhood

Website: https://www.medicalmotherhood.com/

Facebook: https://www.facebook.com/MedicalMotherhood

Twitter: https://twitter.com/shastakm

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

CHAP brings the Healing Power of Art to children and families facing medical challenges.

At CHAP, children are known for their creativity and ingenuity — not by their disease, diagnosis or disability.

Our innovative and inclusive healing arts programs are provided free of charge to children, teens and families affected by pediatric illness, disability or special need. CHAP provides Oregon’s only in-and-out of hospital interactive healing arts program for children facing any medical issue.

CELEBRATING 15 YEARS + 75,000 HEALING ART EXPERIENCES!

Faye Pendergrass, lives in a world where there is no separation between art and life, believing everyone is creative and it’s just a matter of finding one’s “voice.” Graduating from the University of Oregon’s Arts Administration program, Faye has created and developed award-winning art programs, festivals, art auctions, and activities reaching “kids of all ages.”

Working in a variety of roles for Oregon arts since 1985, Faye wholeheartedly says that working at CHAP is her favorite job to date. She goes home every day with a smile in her heart and glitter sparkling somewhere!

My Guest - Faye Pendergrass - Children's Healing Art Project Portland

Connect with CHAP PDX

Website: https://chappdx.org/

Facebook: https://www.facebook.com/ChildrensHealingArtProject

YouTube: https://www.youtube.com/channel/UC1IHV5LRD_vQwRMWYfwebhQ

Instagram: https://www.instagram.com/chappdx/

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

To support individuals and families affected by GATAD2B-associated neurodevelopmental disorder (GAND), to increase awareness, and to work toward research and treatment opportunities to enrich the lives of those with this rare genetic condition.

HHFG desires to help GAND families better understand this disorder and connect with other GAND families online, in their local areas when able, and at the biennial GAND Gathering & Scientific Conference.

HHFG aims to raise awareness of GAND among the general population as well as medical and support professionals. Most doctors, therapists, and teachers have never seen a case of GAND and have not likely even heard of it.

HHFG seeks to increase research and treatment opportunities for the GAND community through establishing a patient registry and by facilitating and potentially funding worthwhile studies.

Tammy Ruh, is currently a registered dental hygienist of 12 years.  She is also a travel agent who specializes in working with special needs families. At 2 years of age, Tammy’s son was diagnosed in 2016 with a pathogenic variant in the GATAD2B gene. 

Since then, Tammy has been an active member of the GAND community & currently serves as Vice President, striving to connect with families and support Helping Hands for GAND in various ways.

She has a passion for helping improve the lives of not only those with GAND, but all those affected by a disability. She lives in Wisconsin with her husband Donovan and 2 children (Hudson & Madison).

My Guest - Tammy Ruh - Vice President - Helping Hands for GAND

Connect with Helping Hands for GAND

Website: https://www.gatad2b.org/

Facebook: https://www.facebook.com/GATAD2B

YouTube: https://www.youtube.com/channel/UCYL5WGB45CtqtyFhpc_yvkg

Instagram: https://www.instagram.com/gatad2b/

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en

The first part of the lives of Joe and Helen Hesketh were previously viewed here on Mindful Inspiration Champion.

A life style of being different began in high school in how they first met. Joe and Helen have now been married for 67 years and their story has some interesting twists and turns including parenting eight children.

Tune in and hear how life was in the 1950s during their four and a half years of dating days. There was humor in the first date. A hurtful Christmas present that can now be laughed at and being left alone with no transportation after everyone had left a friend’s wedding reception are only a few of the experiences.

A Priest once told them that they were each such independent people that he wondered why they were still together and also wondered how they could live together and still be happy and so joyful.

Their relationship story has have been featured on national and local television shows, radio news broadcasts and in numerous national and local publications. One headline read "Helen and Joe Hesketh, an unusual couple" , another read "Helen and Joe Hesketh, RSVP's Inimitable Volunteer Couple". Someone once tagged them as "Couple Power" and they adopted that as their logo.

My Guests - Joe & Helen Hesketh

Connect with the Mindful Inspiration Champion

Website: https://www.themindfulchampion.com

Facebook: https://www.facebook.com/themindfulchampion

Instagram: https://www.instagram.com/mindfulchampion/

Follow My Daughter Aria

Facebook: https://www.facebook.com/ariasarmy

GoFundMe: https://gofund.me/5e2f5fb4

Tune In to the Mindful Inspiration Podcast

YouTube: https://www.youtube.com/channel/UCmQ0RoJXlPh9flty9Zds5Kg

Spotify: https://open.spotify.com/show/0nUrUnETqKQKGXJvLbkTck

Apple Podcasts: https://podcasts.apple.com/tw/podcast/mindful-inspiration-champion/id1566268734?l=en

Stitcher: https://www.stitcher.com/show/mindful-inspiration-champion

Google Podcasts: https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5yZWRjaXJjbGUuY29tLzk0MzhiMzFiLWFhZDgtNDIwMC1iMmFjLWFjZDAxMjE4YWJmYg?hl=en