Get Full Government Meeting Transcripts, Videos, & Alerts Forever!

Community rallies to raise awareness for rare disease

July 31, 2024 | El Paso City, El Paso County, Texas



Black Friday Offer

Get Lifetime Access to Full Government Meeting Transcripts

$99/year $199 LIFETIME

Lifetime access to full videos, transcriptions, searches & alerts • County, city, state & federal

Full Videos
Transcripts
Unlimited Searches
Real-Time Alerts
AI Summaries
Claim Your Spot Now

Limited Spots • 30-day guarantee

This article was created by AI summarizing key points discussed. AI makes mistakes, so for full details and context, please refer to the video of the full meeting. Please report any errors so we can fix them. Report an error »

Community rallies to raise awareness for rare disease
In a recent government meeting, community leaders and advocates gathered to raise awareness about a rare medical condition affecting one in 2,000 newborns. Latasha Martinez, a mother whose daughter has undergone multiple surgeries due to this condition, shared her personal journey, emphasizing the emotional and financial challenges families face. She highlighted the importance of early diagnosis, made possible by advancements in medical technology, which allowed her to learn about her daughter's condition at just 13 weeks into her pregnancy.

Martinez expressed gratitude for the support she received from the El Paso Hispanic Chamber of Commerce and its leadership program, \"Bordered by Change,\" developed in partnership with Wells Fargo. This initiative aims to cultivate leadership skills and community compassion, with Martinez's story serving as a focal point for this year's community project.

Desiree Mansonades, the public policy director of the chamber, echoed Martinez's sentiments, noting the significant costs associated with surgeries for this condition, which can reach hundreds of thousands of dollars. She emphasized the financial strain on families, particularly in a community where insurance coverage is often inadequate.

The meeting underscored the collective effort to bring attention to this rare disorder and the ongoing commitment to support affected families in El Paso and beyond.

View full meeting

This article is based on a recent meeting—watch the full video and explore the complete transcript for deeper insights into the discussion.

View full meeting

Sponsors

Proudly supported by sponsors who keep Texas articles free in 2025

Scribe from Workplace AI
Scribe from Workplace AI