PODCAST · government
Axis Advocacy Podcast
by Axis Advocacy
Giving Sickle Cell Disease patients and their families hope, and helping them survive, thrive, and unite.
Episodes
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Episode 55: UCSF Benioff Children's Hospital-Axis Advocacy
Some of our board members traveled to the UCSF Benioff Children's Hospital in Oakland, California. They were one of the first sickle cell clinics in the U.S. and are celebrating their 50th anniversary. Clinical trials are an essential part of their mission and provide opportunities for patients…
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Episode 54: Teonna Woolford-Sickle Cell Reproductive Education Directive (SC RED)
We are joined by Teonna Woolford, the Co-Founder + Chief Executive Officer of Sickle Cell Reproductive Education Directive (SC RED). https://sicklecellred.org/
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Episode 53: Liz Helms-California Chronic Care Coalition
We are joined by Liz Helms, President and CEO of the California Chronic Care Coalition, an alliance of non-profit, social consumer and provider organizations united to improve the health of Californians with chronic conditions or diseases.
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Episode 52: Sickle Cell-Stem Cell Update April 2021
We are joined by doctors Donald Kohn of UCLA and Mark Walters of UCSF to discuss Stem Cell Research and Sickle Cell Disease.
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Moms' Talk #1
Mothers of children with Sickle Cell disease, Adrienne Shapiro and Francesca Valentine, discuss when they received news of their child's diagnosis and how it impacted their families' lives.
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Axis Advocacy Update October 2020
Axis Advocacy Founder Adrienne Shapiro discusses the 1st 5 years of the organization, and embarks on the next five years as a grassroots organization serving the Sickle Cell Disease community.
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Juneteenth SCD Art & Film Festival
We are joined by Casey Gibson and Shabreon Howard of the 1st annual Sickle Cell Disease Art & Film Festival, taking place on the Axis Advocacy campus in Pasadena, Ca on June 19, 2019. Tickets are free but you need to have a ticket....
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J.Snow/SCD Art & Film Celebration
We are joined by Jared Snow (aka J.Snow) who is an actor, writer, and stand up comedian hailing from Compton California. He began producing comedy sketches on YouTube– and over thirty million views and several years he's working on a new film called Flawed. We're also talking about the 1st Annual...
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Sickle Cell Month - Axis Advocacy
Celebrating the accomplishments of the past year in the Sickle Cell Community, we're joined by Shabreon Howard,a Mother, Photographer/Filmmaker, Sickle Cell Advocate and Writer. Plus we're joined by Nurse Pat Corley and writer Marissa Cors.
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Bill Cummings 2 - Axis Advocacy
Bill Cummings (father, Axis Advocacy board member and blogger) joins us again to talk about some of the legislation taking place with regards to rare diseases.
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Reverend Gordon Clay Bailey - Axis Advocacy
We're joined by Reverend Gordon Clay Bailey of the Unitarian Universalist Church of the Verdugo Hills. We're talking about how music plays such an important part of our lives.
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Shamonica Wiggins & Jewel Darbone - Axis Advocacy
Sickle Cell Advocactes Shamonica Wiggins and Jewel Darbone of Bold Lips For Sickle Cell join us to discuss their organization and what brought them together.
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Dr. Steve Froelich (Grief) - Axis Advocacy
Dr. Steven Froelich joins us again to discuss the various forms of grief. He'll discuss possible ways to cope. Dr. Froelich is a Team member on the Beverly Hills Police Department’s Crisis Negotiations Team as well as being a member of their Peer Support Team. He also serves as a Mental Health...
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Bill Cummings - Axis Advocacy
Bill Cummings (father and blogger) talks about his son's struggles with sickle cell disease and why there is a need for better treatments for this condition.
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Tanya Price - Axis Advocacy
Our guest is Tanya Price, the President and Co-Founder of Sickle Cell Houston.Serving as Houston’s leading sickle cell Community Based Organization and Coordination Center, they provide various services aimed at achieving healthier outcomes for individuals living with the inherited rare genetic...
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Ashley Gregory - Axis Advocacy
Our guest is Ashley Gregory of the Hemophilia Foundation of Northern California. They provide advocacy, support, and resources to over 3,000 Northern California families (in 47 counties) with a myriad of inherited and acquired blood related conditions.
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Andy Thorburn - Axis Advocacy
We're joined by Andy Thorburn, a nonprofit founder, a former classroom teacher and an advocate for people living with chronic illness. He is also running for Congress in CA-39.
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HD Care Gala
Today we’re speaking with many of the presenters and attendees of the recent HD-Care symposium on Huntington’s Disease at UCI. Dr. Neal Hermanowicz, Stem Cell Ambassadors from Americans For Cures, Allen Fernandez of I’m Curable, Frances Saldañia, the President of HD-Care and Dr. Sarah Hernandez
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Bishop Bob Kabugi/Nurse Pat Corley - Axis Advocacy
We're joined by Bishop Bob Kabugi from Kenya, Africa and Nurse Advocate Pat Corley to discuss the world wide issues of Sickle Cell Disease.
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Dr. Steven Froelich - Axis Advocacy
Dr. Steven Froelich joins us to discuss possible ways for people living with Sickle Cell disease to reduce the added stress of going to the ER. Dr. Froelich is a Team member on the Beverly Hills Police Department’s Crisis Negotiations Team as well as being a member of their Peer Support Team. He...
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Nita Thompson - Axis Advocacy
We're joined by Super Advocate Nita Thompson. Nita has dedicated her life to correcting incorrect perceptions about Sickle Cell Disease. We're talking about World Sickle Cell Day, Juneteenth and the current challenges facing those living with the disease.
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Amy Mason - Axis Advocacy
We have a very inspirational conversation with Amy Mason. Amy is the director of the Sickle Cell Freedom Cruise, a nanny and someone living with Sickle Cell Disease.
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Dr. Thomas Coates/CHLA - Axis Advocacy
We're honored to be joined by Dr. Thomas Coates, a pediatric hematologist-oncologist in Los Angeles, California and is affiliated with multiple hospitals in the area, including Children's Hospital Los Angeles.
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1st Anniversary - Axis Advocacy
Axis Advocacy co-founders Adrienne Shapiro and Nancy Rene recall some of their favorite podcasts, the huge strides our organization has made in the past year and what the future holds for people living with Sickle Cell Disease.
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HD-Care 2017 - Axis Advocacy
Today we’re speaking with many of the presenters and attendees of the recent HD-Care symposium on Huntington’s Disease at UCI. Dr. Neal Hermanowicz, Stem Cell Ambassadors from Americans For Cures, Allen Fernandez of I’m Curable, Frances Saldañia, the President of HD-Care and Dr. Sarah Hernandez.
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Dr. Jennifer Braswell/Sanford Stem Cell Clinical Center
We're joined by Jennifer Braswell, PhD, Executive Director of the Sanford Stem Cell Clinical Center at U.C. San Diego. We'll be discussing various trials and successes in Stem Cell Research. Links mentioned: Clinical Trials, CIRM
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Black History Month
Axis Advocacy celebrates Black History Month with Rev. Gordon Clay Bailey of Unitarian Universalist Church of the Verdugo Hills and Gerald C. Rivers, who will perform his rendition of the words of Martin Luther King Jr. For more than three decades Rivers has enacted the speeches of the late Dr....
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Children's Hospital L.A. Passages Program
We're joined by members of Children's Hospital Los Angeles' Passages Program. Their purpose is to help patients and families transition from pediatric to adult care for their chronic illnesses.
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CIRM and VetStem
Our guests today are C. Randal Mills, President and Chief Executive Officer of California Institute for Regenerative Medicine (CIRM), Kevin McCormack, Sr. Director Public Communications & Patient Advocate Outreach of CIRM and Bob Harman, Chairman & CEO of VetStem. All three guests have some...
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Americans For Cures/World Stem Cell Summit
Today we're speaking with many of our fellow Americans For Cures Ambassadors. We were together at The World Stem Cell Summit in West Palm Beach, Florida that took place December 5-9, 2016, and we talked about all the great things that we were experiencing thanks to Americans For Cures.
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Jewel Darbone & Kimberly Medendorp - Axis Advocacy
Today we’ll be speaking with 2 distinguished guests about taking advantage of mental health counseling in dealing with living with this disease, and life in general. We have a conversation with Kimberly Medendorp, a founder of The Peace And Justice Academy, and Jewel Darbone co-founder of Bold…
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Reverend Gordon Clay Bailey - Axis Advocacy
We have a very enlightening conversation with Reverend Gordon Clay Bailey of the Unitarian Universalist Church of the Verdugo Hills.
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Dr. Ted Love Global Blood Therapeutics
Our guest today is Dr. Ted Love, CEO of Global Blood Therapeutics. GBT is developing the promising GBT440, as an oral, once-daily therapy for sickle cell disease. http://www.globalbloodtx.com/
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Prop 71 - Axis Advocacy
We're celebrating the 12th Anniversary of the passage of Proposition 71, which is also known as the California Stem Cell Research and Cures Initiative. Today’s program is dedicated to Bob Klein,the architect of Prop 71. We’ll be speaking with Kevin McCormack of CIRM… Jason Stewart of Americans…
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Dr. Alexis Thompson V.P. ASH
Our guest is American Society of Hematology Vice President: Alexis A. Thompson, MD, MPH. She discusses the many resources available from ASH for patients, caregivers and medical professionals dealing with Sickle Cell Disease.
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Pat Corley RN - Axis Advocacy
We are honored to have a very informative conversation with Pat Corley. She is an RN, and served as Nurse Coordinator at USC's Comprehensive Sickle Cell Center, Health Care Network, LA County, and University of Southern California.
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Sickle Cell Educational Seminar - Axis Advocacy
On this episode, we speak with many of the presenters and attendees of the recent 2 day Sickle Cell Educational Seminar that Axis Advocacy presented with Dr. Carolyn Rowley & Cayenne Wellness Center along with the nursing program of Charles Drew University.
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Dr. Yutaka Niihara/Emmaus Life Sciences - Axis Advocacy
Today's guest is Dr. Yutaka Niihara, M.D. MPH, Emmaus Life Sciences' co-founder and Chairman. He'll be speaking about their promising L-glutamine treatment which just completed its Phase 3 trial for the management of sickle cell disease. www.emmausmedical.com/Article.aspx?seo=129&l=EN&g=30
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Marc Shulman - Axis Advocacy
Marc Shulman of the National Center on Life Planning joins us today to discuss the importance for families who have a member with a disability, the need for Special Needs Trusts, Conservatorships, Living Trusts and Wills.
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Liz Helms - Axis Advocacy
We have a very informative conversation with Liz Helms, the President & CEO of The California Chronic Care Coalition, a resource for California health care consumers who are denied coverage, experience delays or are dissatisfied with the decisions made by their health plan.
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Greg Gorgas/Mast - Axis Advocacy
We have a very informative discussion with Greg Gorgas of Mast Therapeutics, a biopharmaceutical company developing novel, clinical-stage therapies for serious or life-threatening diseases with significant unmet needs, including Sickle Cell Disease.
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Sickle Cell Consortium Recap/ Axis Advocacy Resource Fair Preview
Axis Advocacy Co-Founders Nancy Rene and Adrienne Shapiro discuss the recent Sickle Cell Symposium in Hollywood with some of the attendees. Next, they talk about what they learned at the National Medical Association convention in Downtown Los Angeles. Plus, get a preview of the Axis Advocacy...
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Sickle Cell Consortium - Axis Advocacy
Dr. Lakiea Bailey of The Sickle Cell Consortium discusses the upcoming convention of Sickle Cell Groups from around the world in Los Angeles. In addition we speak with Dr. Bailey and her mother Doris about the trials and hopes of people living with Sickle Cell Disease.
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CDC & Stem Cell Conference - Axis Advocacy
This week we speak with Mary Hulihan of The Centers For Disease Control And Prevention about how the CDC is helping Sickle Cell patients. She also talks about the misunderstandings that some hospitals have with CDC's guidelines. In addition, Axis Advocacy Co-Founders Nancy Rene and Adrienne…
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Dr. Carolyn Rowley - Axis Advocacy
We speak with Dr. Carolyn Rowley, founder of Cayenne Wellness Center, about her organization, the conference they are putting on in September, and Dr. Rowley's Orphanage she built in Kenya. Plus we'll visit with some of the Ambassadors of Americans For Cures.
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Father's Day - Axis Advocacy
Axis Advocacy co-founder Nancy Rene has a conversation with board members Cecil McLinn and Ron Shapiro about being fathers of someone with Sickle Cell Disease and some of the frustrations of getting proper care for their child.
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Judy Gray Johnson - Axis Advocacy
On today’s program, Axis Advocacy board members Adrienne Shapiro and Marissa Cors speak with author Judy Gray Johnson who has written books about Living with Sickle Cell Disease. We learn about Judy’s perseverance in the face of living with SCD and the reasons she's written her books.
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Advocacy Training & HD Care
Axis Advocacy's Adrienne Shapiro and Nancy Rene discuss what can be done to make sure you receive proper treatment when hospitalized. Plus a conversation between HD-Care co-founder Frances Saldoñia and researcher Dr. Joseph Ochaba about the hope for curing Huntington’s disease. Also we’ll speak...
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Memorial Week - Axis Advocacy
We dedicate this week's program to the memory of those who lost their battle with Sickle Cell Disease and other genetic diseases. Learn how you can become a patient advocate for yourself or a loved one.
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HD-Care - Axis Advocacy
Today on the Axis Advocacy podcast, we talk with some of the presenters and attendees of the HD-Care symposium. Learn about what it's like to live with Huntington's Disease, and what hope there is in Stem Cell Research.
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ABOUT THIS SHOW
Giving Sickle Cell Disease patients and their families hope, and helping them survive, thrive, and unite.
HOSTED BY
Axis Advocacy
CATEGORIES
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Frequently Asked Questions
How many episodes does Axis Advocacy Podcast have?
Axis Advocacy Podcast currently has 55 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Axis Advocacy Podcast about?
Giving Sickle Cell Disease patients and their families hope, and helping them survive, thrive, and unite.
How often does Axis Advocacy Podcast release new episodes?
Axis Advocacy Podcast has 55 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Axis Advocacy Podcast?
You can listen to Axis Advocacy Podcast on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Axis Advocacy Podcast?
Axis Advocacy Podcast is created and hosted by Axis Advocacy.
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