Posts filed in Kitchen Sink

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!

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 FDA Issues Draft Guidance on Rare Disease Drug Development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

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

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

#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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It’s the little things… in sterile fields

Posted Monday January 19, 2015 by Melissa

When your child has (or you have) a central line catheter like...

When your child has (or you have) a central line catheter like a port-a-cath, sterile procedure is never something you take lightly. But we as parents generally haven’t gone to...

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Thoughts and Thanks on the Director’s Award

Posted Saturday December 20, 2014 by Melissa

Last night I was incredibly honored to receive the Director’s Award from...

Last night I was incredibly honored to receive the Director’s Award from the National MPS Society at the 28th Annual Family Conference. Barb Wedehase, the society’s Executive Director, offered such...

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I am Her, She is Me, We are We

Posted Friday October 17, 2014 by Melissa

Rare disease parents need each other. We depend upon one another. One...

Rare disease parents need each other. We depend upon one another. One of the first pieces of advice I give newly diagnosed families is to find your person, that someone...

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Speaking of the Orphan Drug Market….

Posted Monday September 29, 2014 by Melissa

Sometimes I like to think that we’re making progress in the rare...

Sometimes I like to think that we’re making progress in the rare disease community. The “we” being the collective we  – the interconnected and interdependent rare disease community that involves...

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Melissa at 2011 MPS Family Conference

A Diagnosis Story

Posted Monday July 14, 2014 by Melissa

Every child or adult with a rare disease has a diagnosis story....

Every child or adult with a rare disease has a diagnosis story. Some are long and traumatizing, some are short and miraculous, and some are just so very sad, replete...

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#PurpleFest aka MPS Awareness Day

Posted Wednesday May 14, 2014 by Melissa

Tomorrow is all about the purple! Happy MPS Awareness Day! We spend...

Tomorrow is all about the purple! Happy MPS Awareness Day! We spend the day sharing about MPS to educate and raise awareness, to make a better community for our children,...

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#SaveJack, #BeBrave

Posted Friday January 17, 2014 by Melissa

I’ll never feel okay about kids dying. Never. And I’ll surely never...

I’ll never feel okay about kids dying. Never. And I’ll surely never feel okay about my best friend’s son dying. But in the whole convoluted process that is drug discovery,...

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What proof does the FDA want in a degenerative disease?

Posted Thursday January 16, 2014 by Melissa

Here is an example in Duchenne MD of why I spent last...

Here is an example in Duchenne MD of why I spent last week at the FDA. In a degenerative disease, if a drug can maintain abilities, why do children have...

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