Meme: 24 Hours

• Post author:Rebekah
• Post published:December 1, 2016
• Post category:Rare Disease

Tomorrow is another day. New beginnings and new opportunities are right around the corner and bad days don't last forever. Keep your chin up!

Continue Reading Meme: 24 Hours

Primary Immunodeficiency Disease: How to Trust Your Instincts

• Post author:Sabina Kennedy
• Post published:December 1, 2016
• Post category:Primary Immunodeficiencies/Rare Disease

Dear Exhausted Mom Living with Primary Immunodeficiency Disease (PI), I know how you feel. You are tired. Our worlds may feel and look similar, but I’m not living with primary…

Continue Reading Primary Immunodeficiency Disease: How to Trust Your Instincts

Source: www.pixabay.com

Is Tourette’s Syndrome a Brilliant Gift or a Dreaded Curse?

• Post author:Alisha Stone
• Post published:December 1, 2016
• Post category:Rare Disease/Tourette syndrome

I once heard that the difference between a good performance and a stellar one is transcendence—going beyond what’s written in the script or a song sheet. And, in my personal…

Continue Reading Is Tourette’s Syndrome a Brilliant Gift or a Dreaded Curse?

[Source: Pixabay.com]

NMO: How One Mom and Pop Founded an Empire of Hope!

• Post author:Alisha Stone
• Post published:December 1, 2016
• Post category:Devic's Syndrome (Neuromyelitis Optica)/Rare Disease

I am digging the Guthy-Jackson Charitable Foundation! When their teenage daughter was diagnosed with neuromyelitis optica (NMO), which is a rare, demyelinating, autoimmune disease that can be life-threatening, parents Victoria…

Continue Reading NMO: How One Mom and Pop Founded an Empire of Hope!

Source: Pexels.com

Cystic Fibrosis Changed Their Lives. They’ve Changed A Community.

• Post author:PW Blogger
• Post published:December 1, 2016
• Post category:Cystic Fibrosis/Timely

This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…

Continue Reading Cystic Fibrosis Changed Their Lives. They’ve Changed A Community.

[Source:: pixabay.com]

PBCers Going Strong for 20 Awesome Years!

• Post author:Patient Worthy Contributor
• Post published:December 1, 2016
• Post category:Primary Biliary Cholangitis/Rare Disease

If you don't believe in the power of people who live with chronic diseases like PBC, you need to meet my friend and inspiring colleague, Linie Moore! In 1995, doctors…

Continue Reading PBCers Going Strong for 20 Awesome Years!

Meme: Add a Little Love

• Post author:Rebekah
• Post published:December 1, 2016
• Post category:Rare Disease

This is always something good to keep in mind, but especially around the holidays! Spoonies often are dealing with fatigue and pain. Don't feel like you need to do so…

Continue Reading Meme: Add a Little Love