Navigating Lupus: Silicon Valley’s Guide Since 1978

Non-Profit Stories: Inspiring Tales from Silicon Valley

In This Episode:

In the vast realm of health challenges, one stands out with its distinct female majority: lupus, a condition where a staggering 90% of those affected are women. Yet, beyond the gender disparity lies a financial storm, with each patient shouldering an annual loss of $50,000 due to healthcare expenses and diminished productivity. But perhaps the most disturbing revelation? Over half of Americans remain in the shadows, either completely unaware or possessing only a vague understanding of lupus. It's time to bring this to light.

Lupus Dilemma of Silicon Valley:

• Female Majority: Ninety percent (90%) of people living with lupus are women
• Financial Struggles: $50,000 is lost annually by each lupus patient in healthcare costs and lost productivity
• Lack of awareness: 63% of Americans surveyed have never heard of lupus or know little or nothing about this disease

About Thomas Bakewell:

Thomas Bakewell is the Executive Director of the Lupus Foundation of Northern California, where he leverages his over 15 years of experience in the nonprofit sector to drive positive change and organizational success. Tom has a history of enhancing program offerings, increasing funding, and improving operational efficiencies in various nonprofits, significantly expanding their impact and reach. His previous roles include leadership and board positions at the Nonprofits Insurance Alliance, the Sovereign Order of St John, Cake4Kids, and the de Saisset Museum at Santa Clara University. Dedicated to professional growth and advocacy for vulnerable societal groups, Tom collaborates effectively with staff, volunteers, board members, and community partners at the Lupus Foundation. Outside of his professional life, he enjoys family time, gardening, and golf.

Show Notes:

• What is Lupus?
  • Lupus is a complex autoimmune disease predominantly affecting women, especially women of color. It involves multiple symptoms and organ damage, including the heart, lungs, brain, and skin.

• What is Tom Bakewell’s motivation behind leading the Lupus Foundation?
  • The executive director shares his connection to lupus with his mother and daughter affected by the disease, fueling his dedication to the organization's mission.

• What are some impactful patient stories at the Lupus Foundation?
  • Highlighting stories of individuals positively impacted by the organization's support and services, including a woman who found support after a lupus diagnosis and a mother in Minnesota seeking empathy for her daughter's condition.
• How does the Lupus Foundation address the challenges faced by women?
  • The organization focuses on women, especially women of color, through diverse representation on the board and women-centric support groups.

• What are the varied support programs offered by the Lupus Foundation?
  • Introduction to programs like the Lupus Buddy Program, health conferences, virtual doctor visits, and support groups aimed at providing comprehensive help to lupus patients.

• What is ‘The Lupus Buddy Program’?
  • The Lupus Buddy Program connects newly diagnosed and experienced lupus patients for support and mentorship.

• What are the exciting developments in Lupus Treatment?
  • Discuss new clinical treatments and technologies targeting lupus and efforts to bridge the gap between patients and pharmaceutical trials.

• What are the challenges with Insurance for Lupus Patients?
  • Addressing the difficulties lupus patients face with insurance companies and the organization's role in facilitating continuous communication for better care.

Links Mentioned:

• Mayo Clinic
• OutRun Lupus 5K Run/Walk
• Stanford University School of Medicine

Connect with 'Akhila Health':

If you or someone you love is navigating the challenges of lupus, contact ‘Lupus Foundation’:

• Connect on Facebook
• Connect on Instagram
• Connect on LinkedIn
• Connect on YouTube
• Email: [e-mail]
• Call/Text: [phone]
• Website: Lupus Foundation of Northern California

Donate: Lupus Foundation of Northern California