74 | Improving the Lives of Mothers Caring for Children with Rare Disease

ANGEL AID is a non-profit that provides mental health and wellness services for mothers of children with rare diseases. A rare disease is defined as one that affects fewer than 200,000 people. Even amongst accelerating scientific advancement, over 7000 rare diseases are still without cure, and only 5% have treatments. There are 350M people globally with rare diseases - around half are children. Mothers of children with rare diseases, or Rare Mothers, are the primary caregiver 82% of the time.

Today's  conversation is a Simply Tech LIVE interview recorded Wednesday, October 27th, featuring my co-host Ali Mazaheri, and our special guests Cristol Barrett O'Loughlin and Smriti Bhattacharya.

October is ANGEL AID’s month of giving, Wellfest 21, an opportunity to help create visibility and energy around the bold vision of providing relief and inspiration to these communities, by connecting 3.5 million rare mothers by 2025.

Cristol Barrett O’Loughlin, Founder and CEO of ANGEL AID, discusses the organizations mission, the experience of care takers in the rare disease community, and the role of technology and digitization in creating community and impact for non-profits.

Smriti Bhattacharya, a senior software engineer at Microsoft and a Rare Mother, also graces this conversation with her presence so that we can hear her story, gain a little more proximity to ANGEL AID’s mission, and learn more about how we can support these incredible caretakers around the world.

The discussion will include the following topics:

-The challenges that families—especially parents—face when children get diagnosed with chronic conditions or rare diseases

-ANGEL AID’s digitization of its support services during the pandemic

-The rise of conversations about mental health and wellness

-The importance of work-life balance and self-care

 

Key Take-aways:

[10:18] A quick introduction to Smriti, Cristol, and ANGEL AID

[11:58] What Ali learned when his child was diagnosed with diabetes

[15:02] Smriti’s experience as a Rare Mother

[18:22] How Smriti and Cristol connected when the pandemic impacted ANGEL AID

[24:20] What motivated Cristol to start ANGEL AID

[26:58] How the organization’s journey with Microsoft started

[30:45] What’s next for ANGEL AID from a business standpoint

[35:32] How the organization and tech companies (like Microsoft) support parents who need better work-life balance

[44:30] About Wellfest 21

[47:58] How to support ANGEL AID

 

Memorable Quotes:

[27:52] “If we’re going to cross borders and cross cultures, then we’re going to need to have multilingual support, so technology is fundamental to our growth plans and growth strategy.” -Cristol Barrett O’Loughlin

[32:22] “Just being reminded and given permission and given inspiration to take