Axis Advocacy Podcast

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 to benefit from the latest research. And that’s what we’re talking about today.  We spoke with doctors...

We are joined by Teonna Woolford, the Co-Founder + Chief Executive Officer of Sickle Cell Reproductive Education Directive (SC RED). https://sicklecellred.org/

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.

We are joined by doctors Donald Kohn of UCLA and Mark Walters of UCSF to discuss Stem Cell Research and Sickle Cell Disease.

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.

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.

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. https://www.eventbrite.com/e/scd-art-film-festival-tickets-59239860016?aff=efbneb&fbclid=IwAR0bwofPJBZjRNVnyy5RuTYyJr2tpf9vx36xfAMLF4eQESDPZjCcEK_qbCk

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 SCD Art & Film Celebration on June 19th at the Axis Advocacy Campus. https://www.everybodygotflaws...

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.

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.

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.

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. 

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 Professional with the Los Angeles County Fire Department’s Critical Incident Stress Management Program.

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.

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 disorder known as sickle cell anemia.

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.

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.

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

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.

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 also serves as a Mental Health Professional with the Los Angeles County Fire Department’s Critical Inci...

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.

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.

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.

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.

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.