We Should Talk About That

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I’m a little late to highlight rare disease month.  Technically, the month of February traditionally is Rare Disease awareness month with Rare Disease Day falling on February 28th.  But, sadly, as is happening with so many awareness months and days in the US, the FDA/NIH planned 2 day meeting focused on Rare Disease Day on 2/27 and 2/28 was cancelled this year.  So, I guess I’m not too late after all, and instead I’m declaring today, the day you are listening to this podcast to be Rare Disease Day.  A day to raise awareness for the 300 million people world wide living with a rare disease.  

A rare disease is when a disease affects fewer than 1 in 2000 people. And that rareness causes significant challenges.  A lack of scientific knowledge and study about these diseases can make diagnosis more difficult. Many people with a rare disease spend a long time being misdiagnosed and therefore unable to access the types of treatments or support best suited for their actual disease.  Funding for research can be harder to find when you are studying a disease that impacts a smaller proportion of the population.  And yet, that smaller proportion does not make the difficulty of living with a rare disease any easier.  So awareness is incredibly important, to bring attention to those with rare disease, to create support and community, and to encourage research.  And today, I have two women as my guests on the show that are living with a rare disease.

Avery Roberts resides in New York, and is a wearer of many hats — an advocate, dancer, foodie, and avid traveler. She was the first wheelchair user to perform on the great stage of the world-renowned Radio City Musical Hall in New York City, as well as, separately, among the first few wheelchair users to feature in a nationally televised live production, where she appeared as a dancer.

Kelly Berger resides in Cincinnati, Ohio, and is a passionate advocate for rare disease, winning a 2024 RareVoice Award. She adores live music and is always attending a concert, typically driving states away to see her favorites. Kelly utilizes her adapted mobility van as her means of independence fueling her thirst for constant travel adventures—she’s explored over 40 states and counting.

They both have Congenital Muscular Dystrophy or CMD for short and they both were recently on Capitol Hill lobbying for Rare disease the last week in February.  We talk about rare disease, the challenges facing those in the disability community, and the importance of having a seat at the table.

Resources mentioned in this episode:

Rare Disease Awareness

Congenital Muscular Dystrophy

All Wheels Up

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The broken rung: a phenomenon even more pervasive than the glass ceiling in holding women back from career success. 

Women around the world do extremely well when it comes to their education. They graduate at higher rates than men do and have higher average GPAs. But then a strange thing happens: Upon entering the workforce, they immediately lose their advantage. When the first promotions come around, the slide continues—for every 100 men who are promoted to manager, only 81 women get promoted. Women risk falling behind far before they are even tapping the “glass ceiling”.

So, what should we do about that?  Especially in a climate where talking about diversity, equity, and inclusion has become the third rail of business development?

McKinsey senior partners Kweilin Ellingrud, Lareina Yee, and María del Mar Martínez have written a new book, THE BROKEN RUNG: When the Career Ladder Breaks for Women--and How They Can Succeed in Spite of It.  The book is based on over a decade of McKinsey research, conversations with more than 50 remarkable leaders, and their own experiences as senior partners working with companies and women leaders. 

Buy the book

Kweilin Ellingrud is McKinsey's Chief Diversity Officer and a director of the McKinsey Global Institute, based in Minneapolis. As a senior partner at McKinsey, she has led research on the topics of gender equality, racial equity, generative AI, the future of work, and global competitiveness. She also serves clients in financial services across strategy and operational transformations.

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I like talking about uncomfortable things.  It's why I have this podcast-so that I have a space to be able to explore topics that might make some people feel uncomfortable, but are typically things we should be talking about more often.  Today is no different.

Today I want to talk about death.  This isn't the first time I've covered this topic.  In fact, WAY back in 2020-even before the world shut down in a pandemic-I talked about death with three other incredible women.  Here is a link to that episode, it's great!

2020 Death Episode

So it should come as no surprise that I jumped at the opportunity to interview my guest today.

Rupert Callender has been a self taught, self proclaimed “radical” undertaker for the past 25 years, bringing unlikely influences such as acid house, crop circles and the counterculture on what remains an extremely patriarchal and increasingly corporate industry. His stripped back immersive approach has led to him being declared “the best undertaker of all time, by a country mile” by The Good Funeral Guide.  His company, The Green Funeral company is in the UK and his memoir, “What Remains? Life death and the human art of undertaking” has been optioned by Working Title to turn into a TV drama.

https://www.thegreenfuneralcompany.co.uk/

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Is talking about the environment controversial?  Nope.  

And yet.....why does the worry wort inside my head always stop and ask "Uh oh-will this be seen as political"?  Luckily,  I have the fearless Debbie Levin as my guest today to quiet that pesky worry wort and lead me in a fantastic conversation about  sustainability and improving the environment.  For more than twenty years Debbie has been a powerhouse in Hollywood, and beyond, in persistently making important changes that has moved our culture towards protecting our environment.  

Today's Guest:

Debbie Levin is the CEO of the Environmental Media Association (EMA), where she has spent over two decades harnessing the power of entertainment to drive environmental change. Under her leadership, EMA has become a leading voice in sustainability within the entertainment industry, launching impactful initiatives like the EMA Green Seal for sustainable productions and EMA IMPACT, a forum uniting leaders in business, media, and advocacy. A passionate advocate and thought leader, Debbie is dedicated to using creative storytelling and industry partnerships to inspire global environmental action. Based in Los Angeles, she continues to champion sustainable practices across media and entertainment.

For more information:

https://www.green4ema.org

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Time to do an update on how things are going in the Department of Education now that we are 623 days into the Trump administration.  Wait, no…..I’m being told it has actually been 27 days.  I’m sorry.

So when I last spoke about the Dept of Education, it was November 18th and I was reacting to the release of then President elect Trump’s 10 point education plan.

I did an overview on the history of the Department of Education and an overview of the programs in which the Department oversees.  I would encourage you, if you haven’t already, to listen to that episode first as I will be jumping into a lot more detail and specifics about the Department of Education in this episode.

You can listen to that episode here

And now we know what the reality is of this administration’s plan.  As President Trump said in a press conference from the Oval office on February 13th, “I’d like to close the department of education immediately”. Although his nominee for Secretary of Education, Linda McMahon is still going through her confirmation hearing, she has echoed this goal, although perhaps on a slightly slower timeline than the President has said. 

Today I want to try my best to articulate what these proposed changes will mean in practice in as plain and clear language as I can.  

Read Project 2025 here

Read Proposed Programs to be closed here

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I am overwhelmed.  There is so much information coming out each day that it becomes difficult to figure out what I should pay attention to -and I think that is the point.  Flood the zone so no one thing can catch too much attention and so many many issues just flow right past us without notice.  

That's why I have been really trying to use discernment on the places I count on to get my information.  And I want to be transparent with you so that you know the lens that I see things through. In today's episode, I share with you where I'm going to keep myself informed on the new administration and the changes that are being made.  I'll link to the three places I specifically mentioned at the end of the show notes.

Additionally, as I have been casting a net to try and figure out who I should be talking to and sharing with you, the WeSTAT community it occurred to me that I have already talked to so many knowledgeable and incredible people over the past five years of doing this podcast.  But as with many things, as new information comes in, old information gets pushed farther back and out of the spotlight.  So today, I want to pull something from the past and place it squarely back into the now.  

Jamie Bruesehoff is an award-winning advocate, sought-after speaker, and heartfelt writer. She is an openly queer woman married to a Lutheran pastor and mom to three spirited children, including an eighteen-year-old transgender daughter. She is passionate about sharing her family’s story, because she believes our stories are bridges to understanding, compassion, and celebration.  My conversation with Jamie was so helpful to me to help me understand my own confusion about transgender people.  And now, more than ever, I think a conversation with someone from that community is essential to de-stigmatizing this population.  

As Laverne Cox said BRILLIANTLY this week, "Trans people make up 1% of the population and we are not the reason your groceries are expensive, or your rent is too high.  I think this country is focusing on the wrong 1%."  Amen Laverne.

 https://www.jamiebruesehoff.com/

News Sources:

Jessica Yellin and News Not Noise: https://newsnotnoise.com/

Axios: https://www.axios.com/

19th News: https://19thnews.org/

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What does it mean to be a "good" mother?  And who determines those measures?  
Nancy Reddy joins me for a conversation about motherhood.  Her new book, "The Good Mother Myth: Unlearning Our Bad Ideas About How to Be a Good Mom" is part memoir, part research based, and ALL thought provoking.  
-What are the four major myths that contribute to an impossible standard for a mother to uphold?  We talk about that.
-What were the major researchers on motherhood; Dr Spock, Harry Harlow, John Bowlby, etc like as parents?  We talk about that.
-What do we need to do to de-bunk these myths and start supporting ourselves and other moms and dads better?  We talk about that.

It's a fantastic, authentic, and vulnerable conversation.  My favorite kind.

Nancy Reddy is the author of The Good Mother Myth, published by St. Martin’s Press in January 2025. Her previous books include the poetry collections Pocket Universe and Double Jinx, a winner of the National Poetry Series. With Emily Pérez, she’s co-editor of The Long Devotion: Poets Writing Motherhood. Her essays have appeared in Slate, Poets & Writers, Romper, The Millions, and elsewhere. She writes the newsletter Write More, Be Less Careful and teaches writing at Stockton University. 
https://www.nancyreddy.com/

Also mentioned in this episode:
Mother Brain: https://www.chelseaconaboy.com/

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January 20th, 2025
Today I want to talk about Martin Luther King Jr.  About the day that commemorates one of the most important civil rights leader of our country.
How did this day come to be?  You might be surprised to hear the long road it took to have this day become a federal holiday.
And it is also a National Day of Service.  So, what does that mean, and how do I find ways to be of service?
https://www.americorps.gov/serve/volunteer/mlk-day

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HAPPY NEW YEAR!!
Welcome to 2025, the year of the snake.  Hmmm...that's interesting.
So, what's in for 2025?
Well, Donald Trump, for one.  And, mouth tape! 
What's out?
I think it's safe to say that feminism is looking very out for 2025.  And I'm worried that Millennials are becoming as invisible as Boomers and X'ers.
Join me and my favorite pop culture girlfriend, Amanda Pedigo, for a welcome to the New Year.  
We should talk about 2025!
https://www.mrjamesnestor.com/breath-book

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Jessica Kidwell and her guest, Liz Minnella, explore the importance of engaging in grassroots activism and the challenges of identity politics, particularly among white women voters. They discuss the creation of Chicago Women for Harris, the dynamics of political engagement, and the need for authenticity in messaging. The conversation highlights the necessity for Democrats to adopt a more aggressive strategy in the face of political challenges and the importance of meeting people where they are to foster genuine connections and drive change. In this conversation, Jessica Kidwell discusses the evolving landscape of politics, emphasizing the importance of social media and authenticity in engaging voters. She reflects on the intrinsic goodness of humanity and the responsibility of individuals to actively participate in the political process. The discussion highlights the need for Democrats to embrace bold strategies and connect with constituents on a personal level, while also recognizing the power of grassroots movements and the role of influencers in shaping political discourse.

Liz Minnella
https://www.lizminnella.com/
https://www.instagram.com/lizaminnella/?hl=en

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