Promising treatments for many rare diseases are on the horizon.  As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved.  

Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.

Promising treatments for many rare diseases are on the horizon.  As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved.  

Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.

March is Hemophilia Awareness Month!

Most people would call him an accomplished musician - Max Feinstein says he's been a noisemaker his whole life. Recently he has been using music to express his journey with Hemophilia and connect with others in the Rare Disease community.

March is Bleeding Disorders Awareness Month!

He is an accomplished musician and inventor - Max Feinstein says he's been a noisemaker his whole life. He uses music to express his journey with Hemophilia and connect with others in the Rare Disease community.

https://youtu.be/cHLXm_N_pVI

The Squirmy and Grubs YouTube channel is extremely popular with 900k followers and a few videos over 4 Million views. This kind of recognition comes with challenges including online comments alleging all kinds of conspiracies, however Shane and Hannah Burcaw continue to be an incredible example for the rare disease and disability communities with their marriage and their outlook.

Check out their recent collaboration with Genentech and singer/song writer, James Ian:

https://youtu.be/ZLyRpDn9bTo

Learn more: smamyway.com.

Rude online comments are just part of the challenge for interabled couple and YouTubers Shane and Hannah Burcaw.  Battling ableism has become part of the struggle but they continue to be an incredible example for the rare disease and disability communities with their marriage and their YouTube channel: Squirmy and Grubs which has over 900k subscribers. Check out their collaboration with Genentech at: smamyway.com.

Ennis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mostly because "it's just fun". We certainly had fun in this conversation.

Find more at ennisrookbashe.com

Ennis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mainly because "it's just fun." We certainly had fun in this conversation. Learn more about Ennis and their latest work at ennisrookebashe.com.

While seeking to live beyond circumstances, we often look past the challenges of our situation.  Maybe this is good, maybe it's bad, maybe both...

As the Dudes ponder this thought, they discuss reasons to remain optimistic.  Enjoy!

BTW, Feb 28 is Rare Disease Day

While seeking to live beyond circumstances, we often look past the challenges of our situation.  Maybe this is good, maybe it's bad, maybe both...

As the Dudes ponder this thought, they discuss reasons to remain optimistic.  Enjoy!

BTW, Feb 28 is Rare Disease Day