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Visit Paris in the Springtime and Raise CRPS Awareness!
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Visit Paris in the Springtime and Raise CRPS Awareness!

  • Post author:EmpatheticBadass
  • Post published:January 3, 2017
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

Besties are… well… the best! Lauren Smith just earned a Best of the Besties award for friendship by deciding to run in the Marathon de Paris 2017 on April 9,…

Continue Reading Visit Paris in the Springtime and Raise CRPS Awareness!
An Aplastic Anemia Feel-Good Story to Restore Your Spirits

An Aplastic Anemia Feel-Good Story to Restore Your Spirits

  • Post author:Erica Zahn
  • Post published:December 13, 2016
  • Post category:Aplastic anemia/Rare Disease/Timely

While Trey Finomore, a preteen from Colorado, was visiting family in Ohio, his parents noticed he was collecting a lot of bruises. Most of the time, it's expected kids will…

Continue Reading An Aplastic Anemia Feel-Good Story to Restore Your Spirits
What is the Truth Behind Fabry and ERT?

What is the Truth Behind Fabry and ERT?

  • Post author:James Ernest Cassady
  • Post published:September 6, 2016
  • Post category:Fabry Disease/Rare Disease/Timely

If you've got Fabry Disease and you live in Canada, you've GOT to check this out. If you don't have Fabry Disease, allow me to clue you in: It's a…

Continue Reading What is the Truth Behind Fabry and ERT?
Here’s Why You Need to Help Mitch McKee Fight Amyloidosis
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Here’s Why You Need to Help Mitch McKee Fight Amyloidosis

  • Post author:James Ernest Cassady
  • Post published:September 5, 2016
  • Post category:Amyloidosis/Rare Disease/Timely

On November 12, 2016, Present Troubles Racing will host their Hills and Hollers Half Marathon & 5K, which is intended to raise awareness about amyloidosis and funds to help support those affected…

Continue Reading Here’s Why You Need to Help Mitch McKee Fight Amyloidosis
Get Out There and Do the Fun Thing for Dysautonomia!

Get Out There and Do the Fun Thing for Dysautonomia!

  • Post author:EmpatheticBadass
  • Post published:July 8, 2016
  • Post category:Dysautonomia/Rare Disease/Timely

Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…

Continue Reading Get Out There and Do the Fun Thing for Dysautonomia!
CRPS: When Pain Continues With a Vengeance

CRPS: When Pain Continues With a Vengeance

  • Post author:Erica Zahn
  • Post published:May 3, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

Let's say you broke your left ankle three years ago, and according to all x-rays, it healed beautifully. So why are you still in pain? And not just a dull…

Continue Reading CRPS: When Pain Continues With a Vengeance
This Little Girl Will Make You Want to Cycle for Glut1 Research

This Little Girl Will Make You Want to Cycle for Glut1 Research

  • Post author:Ronald Ledsen
  • Post published:April 25, 2016
  • Post category:GLUT1 DS/Rare Disease/Timely

Hey, do you love bike riding? Competitively or otherwise? And are you going to be in the Philly area around May 7th? Then you should consider taking part in the…

Continue Reading This Little Girl Will Make You Want to Cycle for Glut1 Research
Do You Want to Meet Others Living With Sjögren’s Syndrome?

Do You Want to Meet Others Living With Sjögren’s Syndrome?

  • Post author:Ronald Ledsen
  • Post published:April 8, 2016
  • Post category:Rare Disease/Sjogren's Syndrome/Timely

Are you one of the estimated four million people in the U.S. living with Sjögren’s syndrome? Are you going to be in the Seattle area between April 8th and 9th?…

Continue Reading Do You Want to Meet Others Living With Sjögren’s Syndrome?
How to Increase Your Steps AND Raise $$ for Epilepsy!

How to Increase Your Steps AND Raise $$ for Epilepsy!

  • Post author:EmpatheticBadass
  • Post published:April 7, 2016
  • Post category:Epilespy/Rare Disease/Timely

 Lace up those walking shoes—even if you’re “walking” is really “wheeling” in your wheelchair and go call all your aunties, uncles, friends, and complete strangers for their pledge of support:…

Continue Reading How to Increase Your Steps AND Raise $$ for Epilepsy!
This Is the Dog-Gone Best Way to Help CRPS
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This Is the Dog-Gone Best Way to Help CRPS

  • Post author:Erica Zahn
  • Post published:April 7, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

Are you available on May 14, 2016? Are you going to be in Jacksonville, Florida? If you answered a double "Yes!" get ready to make a difference in the lives of…

Continue Reading This Is the Dog-Gone Best Way to Help CRPS
The Not-So-Spine-Tingling Condition of AS

The Not-So-Spine-Tingling Condition of AS

  • Post author:Erica Zahn
  • Post published:April 4, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Ankylosing Spondylitis (AS) is a form of inflammatory arthritis that most commonly affects the spine and is thought to have its roots in genetics. As symptoms worsen, the inflammation can travel…

Continue Reading The Not-So-Spine-Tingling Condition of AS
The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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