Two Disabled Dudes

By The Dudes

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical t... more

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FAQs about Two Disabled Dudes:

How many episodes does Two Disabled Dudes have?

The podcast currently has 465 episodes available.

Two Disabled Dudes episodes:

January 03, 2021 132 - 2DD Forum with the XLH Network
Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life.

If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at [email protected] to discuss. Talk to you soon!
...more
53min
January 03, 2021 132 – 2DD Forum with the XLH Network
Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life.

If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at [email protected] to discuss. Talk to you soon!

If you'd like to read a transcript of this episode, click here:

Read Full Transcript

Sean:
Welcome to the Two Disabled Dudes podcast.
Kyle:
We believe life is about how we react.
Sean:
XLH is a rare disease that Kyle and I didn't know much about until we were invited to be a part of XLH week in October 2020. It was a week of programming for the XLH community, full of education and fellowship. We thoroughly enjoyed learning from this panel of incredible patients, advocates, parents, and new friends. Enjoy the discussion.
Sean:
We are excited to be a part of the XLH Week and we're honored to be a part of the conversation today. Over the years, Kyle and I have experienced the power of support and connection through events, just like this one; in-person, virtual, getting coffee with one or two people, whatever it may be, where we have the opportunity to discuss our challenges, celebrate our wins, however big or small they may be. And, of course, collectively explore the ways in which we can move forward in life.
Sean:
We're honored to dialogue with a group of amazing individuals today, closely connected with the XLH community. We'll take a moment to allow each of them to introduce themselves. I'm going to head down here, bottom screen. JoBeth, would you mind stepping up?
JoBeth:
Hey, everybody. I'm JoBeth Sousa. I live in Lewisville, North Carolina. I have two children. I have an 18 year old son, who attends Wake Forest, and he does not have XLH. I do have a 13 year old daughter who was a spontaneous case. We diagnosed her when she was approximately 18 months old.
JoBeth:
I am here on the panel today as a caregiver. I also am a member of the Board of Directors for XLH, as well. Kara Beth was slow to walk, which is how we diagnosed her. She was in-toeing and dragging her left leg whenever she was learning how to walk.
JoBeth:
I had gone with another family on a trip to the beach, and they had a son that was about the same age as Kara Beth. We were just comparing, developmentally, the children and how different their son was compared to Kara Beth. He was toddling everywhere and KB was not.
JoBeth:
We talked to that family and they suggested that we just take her, pay our co-pay, and go see a specialist, and see if we could figure out what was going on. Fortunately, we actually saw an orthopedic doctor, and he did a simple blood test and identified that her phosphorous level was too low. He was the one who was able to diagnose her and tell us about her disease.
JoBeth:
When I left the office, I started spending some time researching on the internet and I found the XLH Network, which is how I got to the network.
Kyle:
And, JoBeth, we are going to talk about this in a little bit, but just so everybody knows, your wonderful daughter is an amazing soccer player, despite XLH. I love that so much.
JoBeth:
Yes. Actually, I am not in North Carolina today. I'm in Virginia, at a soccer tournament.
Kyle:
Nice.
JoBeth:
Her team has won two games already today, which means we get to play for the championship tomorrow. Good times.
Kyle:
Love it.
Sean:
There was a part of me that thought, "Man, her room looks like a hotel. It's so neat,
...more
53min
December 14, 2020 131 - 2DD Forum at Ultragenyx Rare Family Day
It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical. That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day This Year.

https://www.ultragenyx.com/
...more
1h 16min
December 14, 2020 131 – 2DD Forum at Ultragenyx Rare Family Day
It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical. That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day this year.

https://www.ultragenyx.com/
...more
1h 16min
November 30, 2020 130 – Season 4 Finale – More 2DD Grievances
We all know that Sean likes to complain, and apparently Kyle does too. Listen as The Dudes get a few things off their chest. They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.

The video sean mentioned in the episode:

https://youtu.be/j7LBBjZBcLs
...more
42min
November 30, 2020 130 - Season 4 Finale - More 2DD Grievances
We all know that Sean likes to complain, and apparently Kyle Does too. Listen to help The Dudes get a few things off their chest. They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.
...more
42min
November 23, 2020 129 - She Created What She Needed - Effie Parks
Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1. However she soon caught up with all of the episodes and came to the end of her lifeline. So she created the thing that she needed the most. She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this episode to get insight on the value of connecting to others.
...more
39min
November 23, 2020 129 – She Created What She Needed – Effie Parks
Effie Parks immediately related to Rare Disease podcasts when her son Ford was diagnosed with CTNNB1.

However she soon caught up with all of the episodes and came to the end of her life line. So she created the thing that she needed the most. She discusses disability as diversity and connects with parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this conversation between Effie and the Dudes to get insight on the value of connecting to others.
...more
39min
November 16, 2020 128 - Addressing Rare Disease Mental Health - Psychologist Al Freedman
In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al.

Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area, Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy.

More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d

Dr. Al's practice: www.freedmancounseling.com
...more
44min
November 16, 2020 128 – Mental Health & Rare Disease – Dr. Al Freedman
In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al.

Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area, Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy.

More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d

Dr. Al's practice: www.freedmancounseling.com
...more
44min

FAQs about Two Disabled Dudes:

How many episodes does Two Disabled Dudes have?

The podcast currently has 465 episodes available.

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