In this episode of The Health Advocates, Steven Newmark breaks down the latest public health developments you need to know. From a surge in measles and dengue cases to proposed changes in food dye regulations, Steven explains what’s happening, why it matters, and how it could impact people living with chronic illness. He also unpacks the delay in FDA approval for the Novavax COVID-19 vaccine and introduces the Vaccine Integrity Project — a new initiative working to preserve trust in vaccine guidance.

Tune in for the insights you need to stay informed and protect your health.

Among the highlights in this episode:

00:40: Steven Newmark, Chief of Policy at GHLF, reports that U.S. measles cases are surging, nearing a 25-year high with 923 cases, including a hotspot in El Paso, TX

01:22: Steven notes a political divide in public concern over measles, citing Kaiser Family Foundation survey data

01:40: Dengue fever cases are rising in the U.S. due to travel and climate shifts; Steven urges use of DEET-based repellents in high-risk states

02:24: Steven breaks down HHS’s proposed voluntary phaseout of certain petroleum-based food dyes, highlighting industry pushback and potential allergy risks

03:38: Steven explains the FDA’s pause and policy change regarding full approval for the Novavax COVID-19 vaccine, including a new clinical trial requirement

04:33: Steven introduces the Vaccine Integrity Project, a private group of vaccine experts formed to provide trusted guidance amid concerns of policy politicization

05:43: Steven wraps up with a reminder to visit https://ghlf.org/vaccine-resources for ongoing updates and resources on vaccine

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of The Health Advocates, we’re joined by Cristina Montoya, a registered dietitian, advocate, and patient living with both rheumatoid arthritis and Sjögren’s disease. Cristina shares her diagnosis journey, the challenges of managing symptoms from childhood to adulthood, and how she uses her lived experience to guide others through nutrition and advocacy. We also hear from Erik Stone, Director of Data, Learning, and Evaluation at GHLF, who breaks down insights from a recent GHLF survey of people living with Sjögren’s. Together, they highlight the need for better education, tailored treatments, and more support for the Sjögren’s community.

Among the highlights in this episode:

00:54: Cristina Montoya introduces herself, her background as a dietitian, and her personal experience living with rheumatoid arthritis and Sjögren’s

01:39: Cristina explains how to pronounce “Sjögren’s” and offers a clear overview of what the disease is and how it progresses

04:04: Cristina shares her childhood experience with undiagnosed symptoms of Sjögren’s, including dry eyes, parotid swelling, fatigue, and difficulty swallowing

07:49: Steven asks about dietary considerations; Cristina explains how Sjögren’s affects the entire digestive tract and why food texture matters

10:25: Cristina offers ideas for eating leafy greens like kale and how smoothies can be adapted to reduce GI discomfort

13:23: Cristina shares what inspired her to become an advocate, describing herself as an “accidental advocate” who became active after attending her first patient conference in Canada

15:08: Cristina addresses common misconceptions, including that Sjögren’s is “just a dry mouth disease” and not disabling

17:38: Erik Stone joins the conversation to share GHLF’s survey findings: 84% of respondents want help managing symptoms and flares

There’s still time to share your feedback — take our short survey here: https://us8.list-manage.com/survey?u=9d2bc7b86ce2e776e067d6fbc&id=92f785a222&attribution=false

20:24: Cristina reacts to the data and underscores the variability and impact of flares, especially for those without a co-occurring autoimmune condition

22:27: Cristina outlines the biggest needs in the Sjögren’s community: targeted treatments and improved management of fatigue, pain, dryness, and neuropathy

23:31: Cristina and Erik discuss who bears responsibility for education and call for better understanding at the medical school level

Below are additional resources mentioned by Cristina during the episode:

Sjogren's Advocate by Dr. Schafer: https://www.sjogrensadvocate.com/

The American College of Rheumatology, Sjogren’s Disease Experts, and Medical Educators Need to Step Up: https://bexiphd.com/blogs/news/the-american-college-of-rheumatology-sjogren-s-disease-experts-and-medical-educators-need-to-step-up

Sjögren's Recognized as a Disease, What's Next for Patients and Research?: https://www.arthritisdietitian.com/post/sjogren-s-disease-what-s-next-for-patients-and-research

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of The Health Advocates, we’re joined by Gaile Valcho, founder and president of the Brady Valcho Autism Foundation. Gaile shares her powerful story as the mother of a child with autism and her journey to address a gap in community resources in Holly Springs, North Carolina. She opens up about the challenges and triumphs of caregiving while living with lupus, the importance of community support, and her foundation’s work to build inclusive, joyful spaces for neurodiverse families.

Tune in for a conversation about resilience, empathy, and the everyday ways we can show up for one another.

Among the highlights in this episode:

01:30: Gaile shares how a lack of local autism resources motivated her to create the Holly Springs Autism Acceptance Day event

05:07: Zoe and Gaile discuss the emotional impact and validation of community showing up to support the event

06:01: Gaile explains how other families found crucial resources and joy through the event

08:00: Zoe highlights the importance of community support when navigating chronic conditions

10:23: Gaile describes how her lupus diagnosis intersected with caregiving for her son and changed her daily life

14:35: Gaile shares how treatments have helped manage her lupus and how her son Brady supports her

15:37: Gaile discusses the Spoon Theory and how it helps her communicate about energy and limits

19:53: For more information about the Brady Valcho Autism Foundation visit: https://bva.foundation/

20:27: Tune in to our Clinical Trials Talks podcast, visit https://creakyjoints.org/clinical-trials

Whether you’re ready to see if you qualify for a lupus clinical study, have questions about safety, benefits, and preparation, or simply want to hear real stories from other lupus patients, caregivers, and trusted providers who’ve been through it, visit https://creakyjoints.org/lupus-help-center/

21:41: Zoe reflects on her time with the podcast and thanks Steven and listeners

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.