Daniel and his family have spent a lot of time in the hospital. At the age of 12 months, Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. In this episode, Daniel shares some practical, effective tips to help those trips and stays feel less chaotic.
Daniel co-founded DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases. Find Daniel’s work and learn more at The Rare Disease Film Festival
https://www.rarediseasefilmfestival.com/ or on their Facebook page: http://www.facebook.com/rarediseasefilmfestival
JOIN the international community of We Are Brave Together here.
Donate to our Retreats and Respite Scholarships here.
Donate to keep this podcast going here.
Can’t get enough of the Brave Together Podcast?
Follow our Instagram Page @wearebravetogether or on Facebook.
Feel free to contact Jessica Patay via email: [email protected]
If you have any topic requests or if you would like to share a story, leave us a message here.
Please leave a review and rating today! We thank you in advance!
Brave Together Podcast is a resource produced by We Are Brave Together, a global nonprofit that creates community for moms raising children with disabilities, neurodivergence, or complex medical and mental health conditions. The heart of We Are Brave Together is to preserve and protect the mental health of caregiving moms everywhere.
JOIN the international community of We Are Brave Together here.
Donate to our Retreats and Respite Scholarships here.
Donate to keep this podcast going here.
Can’t get enough of the Brave Together Podcast? Follow us on Instagram , Facebook and Youtube.
Feel free to contact Jessica Patay via email: [email protected]
If you have any topic requests or if you would like to share a story, leave us a message here.
Please leave a review and rating today! We thank you in advance!