Blog

Gene therapy – Donations and Dreams

Posted Monday October 31, 2016 by Melissa

We are proud to announce that Saving Case & Friends recently donated...

We are proud to announce that Saving Case & Friends recently donated $150,000 to Nationwide Children's Hospital to support the MPS II gene therapy work of Drs. McCarty and Fu....

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Gene therapy – Donations and Dreams

5 Things to Tell Your Kids About World Rare Disease Day

Posted Monday February 29, 2016 by Melissa

In my dreams, kids go to their parents on the last day...

In my dreams, kids go to their parents on the last day of February (today, February 29th) and say, “Mom, what’s a rare disease?” They’ve heard the phrase on the...

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Ask Yourself 8 Questions If You Think World Rare Disease Day Doesn’t Apply to You

Posted Friday February 19, 2016 by Melissa

Don't have a rare disease? Then you might think that World Rare...

Don't have a rare disease? Then you might think that World Rare Disease Day doesn't really apply to you. But first ask yourself these 8 questions.......

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Ask Yourself 8 Questions If You Think World Rare Disease Day Doesn’t Apply to You

Help Project ALIVE win a People’s Telly!

Posted Monday February 08, 2016 by Melissa

Our Project Alive video is up for a People’s Telly award and...

Our Project Alive video is up for a People’s Telly award and we need your VOTE! Visit http://bit.ly/PA-Telly or follow this step-by-step guide to voting! This is an opportunity to...

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Help Project ALIVE win a People’s Telly!

Do you ever wonder why rare disease parents spend so much time on the phone?

Posted Monday February 01, 2016 by Melissa

I’ve recently had several billing problems with my son’s specialty pharmacy. This...

I’ve recently had several billing problems with my son’s specialty pharmacy. This is not uncommon in rare or chronic diseases. Pharmacy problems. Insurance problems. Phone calls. Documentation. Repeat phone calls....

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Do you ever wonder why rare disease parents spend so much time on the phone?

Death and Curtains

Posted Thursday November 12, 2015 by Melissa

I have a lot of Death in my life. And some really cute...

I have a lot of Death in my life. And some really cute curtains....

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What Scares Me Most at Halloween

Posted Friday October 30, 2015 by Melissa

  Some people are scared of characters like Michael Myers in Halloween....

  Some people are scared of characters like Michael Myers in Halloween. Or the ghostface in Scream. Some people are scared of the dark. Or creepy people. Some parents of...

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What Scares Me Most at Halloween

#Ask100Patients – Our Latest Initiative

Posted Monday October 19, 2015 by Melissa

The notion of patient centricity has grown in buzz factor over the...

The notion of patient centricity has grown in buzz factor over the last several years. In fact, today, our President Melissa Hogan is co-chairing the Patient-Centered Clinical Trials conference in...

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#Ask100Patients – Our Latest Initiative

Did it Go Far Enough? FDA Issues Draft Guidance on Rare Disease Drug Development

Posted Saturday August 15, 2015 by Melissa

Yesterday, the FDA issued draft guidance on common issues related to rare...

Yesterday, the FDA issued draft guidance on common issues related to rare disease drug development. It is another importance event in the shift of thinking about how drugs are developed...

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I Killed My Son…and Other Confessions

Posted Saturday July 18, 2015 by Melissa

  I killed my son. That’s what a man wrote to me...

  I killed my son. That’s what a man wrote to me this morning. He asked me to think about it. Well, I’ve thought about it, and I have some...

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Why My Son Doesn’t Want to be a Fireman… or a Doctor… or a Teacher

Posted Friday June 12, 2015 by Melissa

  When I tell my lunch companions that my son doesn’t want...

  When I tell my lunch companions that my son doesn’t want to be a fireman, they ask, “Why? Is he scared of fire?” chuckling a little and waiting in...

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Project Alive - #WhenIGrowUp

#WhenIGrowUp I want to be…

Posted Wednesday June 10, 2015 by Melissa

Guest post by Geraldine Renton, mom to Ethan (affected by Hunter Syndrome)...

Guest post by Geraldine Renton, mom to Ethan (affected by Hunter Syndrome) from GeraldineRenton.com: ————– Project Alive What is Project Alive? In the simplest of terms…it’s a chance for boys...

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#WhenIGrowUp I want to be…

Saving Case … and Friends

Posted Tuesday May 05, 2015 by Melissa

Nothing is constant except change, they say, and that is true in...

Nothing is constant except change, they say, and that is true in our life as well. When we started this journey over six years ago, we had no idea where...

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Saving Case … and Friends

The Honest MPS Dictionary

Posted Thursday April 02, 2015 by Melissa

There are terms that MPS or other rare disease parents use that...

There are terms that MPS or other rare disease parents use that are just understood, no explanation needed. We use them and they carry such information and emotion that are...

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The Honest MPS Dictionary

To the Child Who Says Hello

Posted Friday March 20, 2015 by Melissa

Everyday I walk my son into school. Sometimes I’m running to catch...

Everyday I walk my son into school. Sometimes I’m running to catch up with him, sometimes he reaches for my hand and we look like any “normal” parent and child...

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To the Child Who Says Hello

Bittersweet Birthdays of Rare Disease

Posted Thursday March 12, 2015 by Melissa

For most MPS families, and many of those in other rare diseases...

For most MPS families, and many of those in other rare diseases as well, birthdays are very bittersweet events. What is meant to be a celebration is simply a reminder...

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Inside a Rare Disease Clinical Trial – #HunterSyndromeLive

Posted Sunday February 22, 2015 by Melissa

Since 2011, once a year, Case Hogan travels to Chapel Hill, NC...

Since 2011, once a year, Case Hogan travels to Chapel Hill, NC for an annual clinical trial visit. It is 11 days of travel, physical testing, cognitive testing, infusions, procedures...

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Inside a Rare Disease Clinical Trial – #HunterSyndromeLive

#RareDisease Tweet Chat, hosted by MassBio

Posted Thursday February 19, 2015 by Melissa

Twitter is my favorite social media tool in the rare disease community....

Twitter is my favorite social media tool in the rare disease community. Through Twitter, I’ve met other advocates, engaged in advocacy and awareness efforts, and developed a better social media...

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