Two Disabled Dudes

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/

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.

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.

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

Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life.  But does it cause them to jump into some things too quickly.  Kyle thinks it caused him to get in over his head when he bought his first home.  Is he doing it again?  Listen as The Dudes wrestle with this topic.